Month: March 2015

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!

Cassandra -Charcotchacha copyright 2015

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!

Cassandra -Charcotchacha copyright 2015

Thought I would throw in something to bring you a smile, so here are the photo’s of the week!  Took them myself.

  

Some neighbors who dropped by to say hello this week!

Cassandra, Charcotchacha copyright 2015

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 dispensing medical advice, or stating medical facts, only my opinions and knowledge of Charcot foot as I know it to be.  Please see your physician or medical facility if you suspect you might have Charcot foot.  -Cassandra, Charcot Cha Cha

Depressed, that is the question.  And the answer is NO!  Well, try very hard not to be consumed by too much fretting and worrying about your Charcot foot condition.  Indeed there are moments when we realize how much our lives have changed and how much they will surely change in our future.  But every horizon holds a glimmer of hope and that is where I try to stay focused.  My upcoming surgery is a huge fear, and I worry about that 50% failure rate…but that’s also a 50% success rate too!  So it helps me to try to find that glimmer of hope.  Will I be able to return to work, be able to even walk ever again?  All these thoughts are shared by all of us with Charcot foot.   But only time will reveal the answer to those questions, and spending one’s day going over and over the same thought could lead you to be depressed.  I find that the best way to prevent that is to keep your mind occupied as much as possible.  I find that hand/eye coordinate activities are best for me.  Some things you might try doing are:

• Jigsaw puzzles.  I prefer the 300 to 500 piece because of the smaller finished size, and thus more likely to fit on my desk.
• Crossword puzzles.  I do all the easy questions first, and hope to have half the letters already for the ones that stump me!
• Papercrafts, such as making homemade thank-you cards. I like to cut out images from magazines and letters/words to use on mine.
• Or any other kind of craftwork.  Wood carving, painting,  etc.   I enjoy hand painting old vintage purses, bringing new life to old.

• Reading the daily papers.  I find that reading the larger daily newspapers front to back to really take you mind on a road trip away from worry and fret.  (Well, at least away from your own!)  As discussed in another post, try to make your surroundings as pleasant as possible, and make sure to keep items within arms reach that you might need throughout the day, and most of all, keep your mind occupied.  Not with the big-picture, and “what-if’s?” but the daily, the here and now.  Make today your only concern.  That old adage of “one day at a time” really does work!  I’m amazed, looking back, that I have been laid-up with non-weight-bearing for five months already!! It has gone by so fast, and it shall for you too.  So chins up my fellow Charcoters, and have a pleasant day!

Today I want to talk about the importance of exercise for those of us who are either in a state of NWB (non-weight-bearing) on a foot or feet, or perhaps are limiting your walking in order to preserve your foots stability after surgery or wearing a boot or cast.  It is a fact that being sedentary for so long will lead to muscle mass loss, and can increase our chance of getting osteoporosis, (or make it worse, if you already have it).  You might think, “What sort of exercise could I possibly do…I sit all day!”  But there is actually a lot of things you can do to help your body out, even when sitting down.  From your wheelchair, or a firm chair (like a dining chair, not a soft, sinkable bark-a-lounger!) you can do a number of stretching exercises and even throw in a bit of cardio too.  And laying on your bed, you can do several more.   I recommend you make an effort to bend, flex, squeeze several times a day, not just once.  Sitting for long periods of time can lead to a blood clot in the legs, so moving your body and legs helps to prevent that.  If you have heart issues, or have concerns do not hesitate to check with your physician first!

Before I was diagnosed with Charcot foot, I led a fairly active lifestyle,  hiking several times a week, taking my kayak out for a paddle, and riding my bike.  Becoming suddenly chair-bound and sedentary is hard to accept.  But, I was and am committed to not letting my muscles fade into obscurity, so I sort of came up with my own exercise regimen to help keep my blood flowing and heart pumping.  I’ll lift my legs, bringing my knees up as high as I can, alternating legs for 5 times each.  I stretch my arms up as high as I can and then bring them down to touch my toes.  Doing this faster makes it more cardio-worthy.  I’ll lift myself out of the chair to a standing position, then sit and get right back up again, 10 times.  Other chair things are shoulder rolls, rolling each shoulder in a circular motion 10 times in one direction, then 10 times in reverse.  Neck rolls too.  When I am up and about in the walker, I’ll come to a stop and lower myself down towards a one legged squat (I go as far as comfortable…never go farther than comfortable, is my rule…each day comfortable gets lower, so this is good!) hold the position for 5 seconds and repeat 10 times.  Another thing I do (which cracks my mother up) is butt cheek squeezes.  Just compress your cheek muscle and hold for a few seconds and release.  I like to alternate from left to right, which is probably what gets mom giggling!  When laying on the bed there are a number of things you can do that do not involve your foot at all, which is great!  I do crunches, which is to bring up your head and shoulders from a flat laying position.  I started at 10, and can now do 100, (but it’s a grunt!).  I do leg lifts from laying flat on the back, and leg lifts from laying on one’s side.  I’ll do 10 each leg.  I also like to sit on the edge of the bed and pump my legs up and down in synch with my arms super fast for 150 times or so for an extra cardio boost.  Now, I know that these might seem like not much, or for some it might seem too much…but my point is that you try to do something for yourself because it is so important to our bodies.  So remember throughout your day to make attempts at bending, flexing and squeezing!  (be quiet, mom!)

-Cassandra -Charcotchacha copyright 2015

I want to talk about the importance of home-safety in regards to our mobility devices.  Wether you are using a walker, crutches, or a wheelchair to get about in your home, having clear,  unobstructed pathways is extremely important.  Since staying NWB (non-weight-bearing) on our feet is so critical to our healing, an opportunity for falling or  stepping on our healing foot is to be avoided at all costs.   Fortunately at my parents house where I am staying, they have a vinyl laminate floor that is smooth for zipping about in my transport wheelchair.  But my mother has all these beautiful hand loomed throw rugs she makes all over the house, so I had to have her set those aside while I am staying here.  Throw rugs, and where carpets overlay other carpets, especially, are dangerous for being a fall or misstep potential if you are not careful.  Always be aware of your surroundings and watch out for small steps or changes in height on the floorways. Vigilance at all times of what kind of surface you are walking on is really key to keeping you on your feet, but removing things like the throw rugs reduces your risk by quite a bit.  So stay on your toes, if even only in our dreams, my fellow Charcoters!

-Cassandra -Charcotchacha copyright 2015

Today I want to talk a little bit about all the various methods of transportation available to those of us suffering from Charcot foot and the dreaded NWB (non-weight-bearing).  Since the very point of NWB is to literally not put any weight on your foot, it means the other foot must now do all the work.  We have to move about in our lives, for numerous reasons.  Getting to the bathroom.  Getting into the kitchen to make a meal,  getting to the car for a run to the store or a doctors appointment, etc.   There are several options to choose from.  There are crutches, walkers, knee-scooters, knee walkers, transport chairs and wheelchairs.  Crutches and walkers use the strength in your arms to lift yourself as you take a hopping step with your good foot.  Knee scooters, and the knee-walker involve placing your bent leg and knee onto a padded platform. In the case of the scooter, you hold onto a steering device on the scooter and propel yourself with your good leg/ foot.  With the knee-walker, you walk almost like you would with your own leg, but instead you are placing your weight on a peg/pole that comes down to the floor from the knee platform, while your bent leg, from the knee to the foot, extends from the platform to the area behind you.

In my case, I choose to use a walker because I found it to be very stable, and I am not! I don’t trust my balance abilities enough to be comfortable with crutches.  It is important you stay within your comfort zone.  Safety first!  I use the walker several times a day, mostly to get into the bathroom, but I also use it to stand, and walk around the house to increase blood flow to my feet.  We shouldn’t sit the entire day, and sitting too long without exercise can lead to blood clots, so I make several trips ‘round the abode a day.  When I am sitting, I have chosen to use a transport chair for my main seat.  It is much like a wheelchair, though it only has 4 small wheels, and not the two large rear wheels used for propelling.  I use my good foot to pull or push myself about.  I have found this to work extremely well for me because I am not one to sit still for long and even if I just need something a few feet away, I can maneuver easily to get it rather than standing up from a non-moving chair and use the walker for two steps!  You do need to have vinyl or hardwood or laminate floors though for best ease of use.  I have found the transport chair super handy because it free’s up my arms and hands.  This allows me  to get into the kitchen and prepare meals without having to wear my good foot out with long-term standing.  Takes a looooong time though, to get used to the turning wheels in the front always bumping into stuff!

A great help and resource is the Visiting Nurse Association.  In my city they operate what they call the “loan closet” and you can borrow, without charge, walkers, crutches, transport chairs, and more.  Visit them at www.vnaa.org.  You can also purchase from Ebay, or wallmart online.  I bought my transport chair from Ebay for $90, which included shipping.  Stay mobile!

-Cassandra -Charcotchacha copyright 2015

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 dispensing medical advice, only opinion.  Please see your physician or medical facility if you suspect you might have Charcot foot.  -Cassandra, Charcot Cha Cha

For 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.aspx

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

WALKERS VS. CRUTCHES

What is your preference?  I’d really like to hear from those using either mobility device why they like to use the one they do.  For myself, I have chosen the walker.  I’m not elderly, and I’m certainly no spring chicken, either.  I do suffer from some form of vanity, but it appears to not affect the part of the brain that freaks out about being seen using a walker.  I suspect, (though can’t back it up with statistics), that anyone younger than 40 is going to go right for the crutches, as walkers seem to relate to old age in many peoples minds.  I’ve known of some folks who were certifiably old, refuse to use a walker for that very reason!  Well, for me that defies reason, and I chose to use a walker because of it’s stability,  and my apparent lack-of!  In the hospital I was given a choice by the physical therapist of crutches, or walker.  She made an assumption (I am assuming!) that I would prefer the crutches (must be because I look younger than my age, no doubt!).  But after just two wobbly steps, I said “no way”!  I mean, it was clear as day to me that I needed something to hold onto whose stability came from itself, and not from me!  I did try crutches later on, around the 3 month mark.  But even though I was able to swoosh about the abode with some amount of grace, I never really felt quite centered and balanced.  And that my friends, is uber important for those with Charcot foot who are being in a state of non-weight-bearing.   Losing one’s balance means a mis-step to correct, and an opportunity to accidentally step on your NWB (non-wieght-bearing) foot.  The primary assist in healing is keeping off that foot, so remember to try to keep good balance no matter which mobility device you select.  So cautiously carry on, fellow charcoters!