HOMEWARD BOUND?

I hope everyone is enjoying their summer! I am trying to make the best of mine…sitting out in the sun and getting just enough of a tan to fake everyone into thinking I am having a normal summer, ha ha! I suppose I am really just trying to fake myself out!

There are ups and downs with Charcot Foot…and I just found a down; just got my “statement of benefits” from the health insurer, and it looks like I am expected to pay for half of the bone stimulator…to the tune of $1,450!! Had I known this prior, I am pretty sure I would have said “thanks, but no thanks”! Ahh well, I suppose really, this is a small price to pay for getting my foot back into walk-able condition, wouldn’t you agree?

Speaking of my foot being walk-able…my doctor says it is looking great and I might be able to introduce some weight bearing in as little as 4 weeks! Like, ACK! Wow! Well, it’s exciting, of course, but also scary as hell!

And, it looks like I am about to finally move back home to my condo!! Y e s s s! I am having a chair lift installed in the next few weeks, and I have sold my stick-shift car and am in the process of getting a car with an automatic transmission, so as to save my foot from all that clutch shifting!  I am finding, however,  that being a buyer with a walker is extremely intimidating for most sellers…so far I have had two people actually refuse to let me drive their car!  One guy used insurance purposes as his excuse, and the other fellow just outright looked at my foot and said he did not trust my ability to drive, even though I explained I was perfectly capable!  (Him I just walked away from…not playing his game!) That’s ok…my philosophy is such that I know their car was not the right one for me. The right car will also have the right seller, who will be kind and unafraid of a woman with a walker and wearing a huge ugly boot on her foot!

So, things are looking up! It’s been a long road, but I think my destination is approaching soon. Same for all of us suffering from Charcot…there is a period of waiting waiting waiting, and finally better days come. So hang in there fellow charcoters!

 

-Cassandra, Charcotchacha copyright

CHARCOT FOOT AND SLOW RECOVERY

My apologies for not being consistent with my updates, it’s amazing how one can forget to tend to things when you have nothing to do!

It is now getting full swing into summer, and I am still housebound elevating my foot. For reasons unknown, it is taking longer than expected or my surgical wounds to close and heal, but they are nearly there now, and my doc says all looks well and still no signs of infection. I have started with the ultrasound bone stimulator…20 minute daily sessions. Doesn’t hurt, and I only occasionally will get a zingy sensation in the foot from it. I hope that it works to grow new bone for me!

As I am laid-up in my little cottage, It is odd and mildly depressing to hear out my window the people laughing and chatting as they pass by on the street, going on leisurly walks, the kids giggling on their skateboards, cars being entered into and fired up for trips to the shopping center or the restaurants.   But I know that in small time, hopefully I too will once again join society and help stimulate the economy with my beloved shopping trips…just not for shoes, ha ha!

If you too are also housebound, doing the non-weight-bearing thing, wearing an aircast, or recovering from surgery, try not to dwell on your “TODAY”, but rather focus on the potentials for your “tomorrows”, and the hope for walking again and being productive. Take each day as a step in the process, and be sure to mark each day off the calendar as it passes, you’ll be amazed how quickly time will fly. So stay positive and ever hopefull my fellow Charcoter’s…we will get through this!

-Cassandra, Charcotchacha copyright 2015

 

THE OTHER SIDE OF THE FENCE!!

Having faced the hurdle of my reconstruction surgery, I am essentially now standing on the other side of the fence, where the grass is going to hopefully be greener!

The long months and days leading up to the surgery are so different than these days leading now away from the surgery. Now I have a purpose and a focus: healing! Not that I didn’t have those things before, it’s just that now is where the good stuff begins. Now is when my bones will hopefully come together and fuse, where new bone growth shores up all that is loose.

My healing has gone good thus far, I am happy to report. No infections! Staying in my little cottage has been cathartic; so peaceful and no stress. Definitely going a bit stir crazy with the constant leg elevation, but it is something we all just have to get through after our surgery. And I am almost done with this part of my recuperation. Whew!

The next step is my doctor would like me to get a bone stimulator, which I am to wear on my foot for 30 minutes a day. It shoot little electrical impulses which stimulate the growth of bone. A definite plus in my healing regime. My insurance may not cover it though, and they cost a pretty penny. We will see what happens.

So, just wanted to update my situation. For everyone who has to go through this process, make sure you enjoy your own company for all that bed rest! Have lots of books and magazines, your laptop or ipad, and of course headphones and music!

-Cassandra, Charcotchacha copyright 2015

 

POST SURGERY AND A NEW HOME

Well, I made it! My operation was a success with my surgeon telling me that it could not have gone any better nor he be any happier!! YAY! I have to now endure an almost torturous 3 weeks with my leg and foot elevated 24/7, only allowing down time for bathroom breaks. However, I am already a third of the way through, and I joy at putting a big X on the calendar as each day passes!

 

On a more somber note, I’ve had to change residences. As I have mentioned before, I was staying in my parents home while I go through this because I could not access my condo and it made it easier for my mom to give me assistance. But my father is very selfish about his space and has resented my presence from day one. When I arrived home from the hospital after surgery, he verbally attacked me and we got into such a row that we nearly threw fists. I decided then and there that my being in that house with his negative energy was definitely not conducive to my healing and well being! Fortunately a dear sweet neighbor has allowed me the use of her little cottage in the back, so I now have a quiet and stress free environment to recuperate and heal. It has a refrigerator and a microwave so I am even able to prepare my own meals. It is truly a blessing to receive her generosity!

This tale is most likely a commonality we all share to some degree because we either have to move into someone else’s home or a facility to await surgery and recover and we don’t have much in the way of options.

Just have to hang in there and try to get back home again someday!!! For me it’s been 8 months, and probably a few more to go. A rough year, indeed…but be strong my fellow charcoter’s, there is a light at the end of the tunnel!!

Cassandra, Charcotchacha copyright 2015

 

PARIS IS FOR LONERS

No, that isn’t a typo.  Usually the saying is “Paris is for lovers”, but I rather like my change of wording, because I have found it to be so true.  Paris really is the perfect place for loner’s to vacation.  I ought to know, because I have been a self described loner for nearly my entire life.  And Over the past 10 years and 5 trips to Paris, France,  I have come to know and appreciate how accommodating it is to a loner.  Now, this is not to be confused with a single traveler who is not a loner, but merely alone in his/her travels.  No, indeed Paris can be,  in fact, one of the loneliest place on earth if you seek the company of others.  I will elaborate on this a little further on.

If I am able to ever return to my beloved Paris it will only be because my Charcot Foot reconstruction surgery is successful. Though I will spend more on Taxi’s because my walking ability will be restricted.  If you have never been to Paris, I can tell you that it is a walking city.  BEAUCOUP  walking.  (That’s French for booookoooo!)  The easiest and most affordable way to get around Paris is to purchase a pass and ride the Metro: the subway.  Unfortunately though, Paris is not a very handicap accessible city, and nearly every metro station you step off a train into, requires you to get back up to street level by means of your own two legs.  Though some of the larger major stations will have elevators, the majority of them do not.  And then one must factor in that the metro only gets you sort-of-close to your destination.  It most always includes at least a block or two of walking once you get up to the street level.  And then you have to factor in all the stops and places you plan on seeing in one day…I kid you not when I tell you that in Paris you are constantly walking, getting onto the Metro, walking up tons of stairs (usually 4 flights per station) and then walking a few street blocks.  All. Day. Long.  Now, if you are like I was prior to this whole Charcot mess, you would have loved all this walking.  I truly did, and to make it even better, you walk so much in Paris that despite eating chocolate croissants for breakfast (lunch and dinner) you actually lose weight during your trip to Paris!  So very true.  One time I even walked the stairs up the Eifel Tower, just for fun!!!  Though we only were allowed to go to the height of the second platform,  (not sure why, they had it closed)…and I was very disappointed.  Definitely lost weight that trip!  So as you can see, due to the high amount of walking involved, I’m just not able to know as of yet if I can ever manage Paris again.  Time will tell!

But I love to talk about Paris and I’m happy to share with you some of my observations from my numerous trips there.  Which brings us back to why Paris is for loners.  The city is designed for loners, in my opinion.  The very people of Paris are made up of loners!  This is because Parisians are very private people.  A typical Parisian will count only their family and a few good friends as “close”, and the hell with the rest!  They do not talk to strangers, in general, and they do not smile at passers-by.  There is no conversation with others in long lines, no small talk with the grocery store checker.  For some people first visiting (and maybe always!), this might come across as cold and harsh, but really it is only because the French people are private and tend to mind their own business.  A wonderful quality, really.  I’ve been to Paris with friends, with family, and I’ve been to Paris with just me, myself and I.  I’m not sure if it’s the loner in me, or just that I like to have Paris all to myself, but I think I love Paris best when I am alone.  Don’t get me wrong, I have had fantastic times there with my friends!  We have had many adventures and wild stories to tell, though some are best not told. (big grin!)  It is as basic as wanting to do Paris in my own time, and see things slowly.  I’ve done lots of trips where the day is “go-go-go” from sun-up to sun-down, and I prefer to do things much more relaxed.  Too relaxed for the high energy of most of my friends.  Me, for example, loves to sit inside the beautiful Notre Dame for at least an hour.  There most often is music of some kind playing, either monks singing, or the organ will be playing…and it is just heavenly, truly divine!  Probably literally.  To me, Notre Dame is one of the most beautiful and magical places on earth, having served as a house of God for over 1000 years!  The amazing gothic architecture,  the vaulted ceilings and all the masonry details, just take my breath away.  It’s so dark and mysterious inside.  Another fabulous gothic church is St. Eustache, though they are restoring it by cleaning all the years of city soot off the walls and ceiling, and…I don’t care for the new refurbished look at all!  It’s like erasing all the patina, in my opinion.  (If you would like to see a  short clip I took inside Notre Dame with monks singing, click here:  https://youtu.be/K_oGo6SPQnA)  Another place I love to take my sweet time at is the many numerous Paris flea markets.  I need to stop and gaze at each vender’s tables to see what is being offered for sale.  European antiques truly are very different from American antiques, and they have many more years of history up for offer, too.  I usually purchase numerous small, packable items that hold an aura of mystery or sentimentality to me.  For example, I once purchased a young architects date book from the 1930’s.  It’s only about 1 1/2 inches by 2 inches and has that lovely hand script that architects favor and it contains many dates with “Madame this and Madame that”.  I wonder what this mans life was like?  I googled his name in case he later became well known, but alas he faded into architectural obscurity!  No matter, I hold a bit of his life!

Another place I like to linger is the sidewalk cafe.  Just sit down in any chair outside of a cafe and along will come a waiter.  Order your expresso or my choice of “cafe American” which is less strong, (but still grows hair on your chest, none-the-less!) and watch the human parade go by.  As long as you have placed an order, they will never insist that you leave.  This is de rigueur for Parisians,  though I don’t like to stay over an hour, usually.  All this slowness in my itinerary is usually too much to impose on others when traveling which is why I tend to enjoy Paris more when I am alone and able to impose it apon myself!  Another reason Paris is perfect for loners is because of how easily it is to navigate if you are of even average intelligence.  The metro system is easy to figure out, with all trains direction being governed by it’s end station.  and though most Parisians will claim to not speak english, they often will break into English if you offer them some French first.  It is because of this that I have failed to become fluent in French, only knowing enough to get by.  Really, language isn’t needed much at all in Paris.  Shops are easy with most everything having a price marked, and the currency (euro) easy to use.  When ordering in a patisserie (bakery) or cheese shop, pointing and hand gesturing gets you by if you don’t know any french.  And even if you cannot figure out how to get where you are going, simply strolling the street will reveal many interesting shops or little hidden gems like pocket-parks, and you are bound to come across a metro station eventually.  So you see, Paris is ideal for Loners.  And yes, lovers too, of course!  I hope you have enjoyed this little vignette of Paris that I have shared with you!  Au Revoir!  See you on the other side of my surgery!

Cassandra, Charcotchacha copyright 2015

CHARCOT FOOT AND SURGICAL JITTERS!

Well, I had for some time now planned on writing this piece regarding my fears on my upcoming reconstruction surgery.  But as I step into the final week prior to surgery (twice, now, since the first had to be rescheduled!),  I find myself feeling surprisingly calm.  Not sure why this is but perhaps it has to do with my having so much time to hash it all out in my mind.  I tend to typically “worse-case-scenario” just about everything I am faced with,  dissecting and analyzing  every possible angle until when at last I confront whatever it is, it turns out never as bad, or as hard as I had expected.  I hope I will be thinking this the day after surgery!

So here we are…my surgeon is about to attempt to escort my Charcot deformity onto the next bus out of town!  I hope he is successful!  He wants to visit briefly one more time prior to surgery, no doubt to remind me once again that there are no guarantee’s, that the risks of failure are high.  (He loves to tell me that…can’t say I blame him, it’s a lot of pressure on him!)  I’m doing the antimicrobial scrub daily to rid my skin of bacteria before they cut me open.  (Though every time my mom’s shower curtain touches my body I wonder if I am reversing the treatment!!??)  And do I have to tell you how damn hard it is standing in the shower with your walker?  My parents don’t have a tub, but thankfully they have a walk-in shower, and I even had an old walker we saved just for the shower so I wouldn’t have to use the new one…they aren’t meant to be waterproof, ya’ know.  So far so good.

I’m also doing a daily prayer, asking for assistance from God to see me through safely.  I pray that my surgeon is bright, fresh and focused the day of my surgery!  I pray that he is able to complete his repairs in one operation!  I pray that the anesthesiologist is on top of his/her game and never fails to monitor my vital signs (even when they excuse themselves to go to the restroom)!!  I pray that my nurses are alert and have a kind touch! And most importantly, I pray that my doctor is able to piece back together my many broken bones, large and small, that his fusions are set correctly and the bones heal and bond as we hope that they do.  And I pray that when the time comes to put my weight on my foot and walk with it again, that it stays strong and carries me along…for years to come! AMEN!

I’ll post one more article before I go into surgery…just for fun, and to lighten the mood.  I will write about one of my favorite things in the whole world:  Paris, France!  So stay tuned!

Cassandra, Charcotchacha copyright 2015

WEIGHT-LOSS UPDATE!

Well ok, Charcoter’s…the evidence is in.  If you put in the hard work, you will be rewarded, and my calorie suffrage has paid off!  Last week I lost 5 pounds, and this week I lost a whopping 9 pounds for a total loss so far of 14 pounds!  I now weigh less than when I first got diagnosed with Charcot Foot and have been sedentary with non-weight bearing restrictions for nearly 8 months. YAY!!

You’ll probably be wanting to know how I have done this, and it’s basic…about 1000 calories per day.  It’s really not as bad as that sounds.  I will layout a typical 1000 cal. day below:

  • BREAKFAST:  I have a small breakfast which consists of a few items I rotate daily.  An example is a 225 calorie breakfast of 1/2 cup of lowfat cottage cheese (90) calories, (I like mine with fresh cracked pepper and dillweed!), half of an apple (40 calories…the other half I eat with lunch) and half a slice of whole grain bread, no butter (55 calories) and then there is the creamer in my coffee, which adds 40 more calories.  Some substitutions can be half a banana instead of apple, 1/2 cup of lowfat yogurt instead of cottage cheese ( Light & Fit brand yogurt is great , it has no added sugar and only 45 calories per serving…this lets you have the other half of the whole grain bread, if you like!) or you could skip all the other items and have an Atkin’s bar which averages about 200 calories each.  Another option is to have a 1/2 cup serving of oatmeal which is 150 calories, with milk it’s about 200.  But that would be all you get…which is why I prefer the cottage cheese/apple/bread combo as it seems like more food. This combo also is somewhat low carb…about 25 grams.
  • LUNCH:   For lunch I will have the other half of my apple from breakfast (40 calories) and a whole slice of whole grain wheat bread (cut in half because it seems like more, 110 calories) and one tablespoon of Jif creamy peanut butter spread on top (90 calories) and a cup of hot chicken broth which is 0 calories, for a total of 240 calories for lunch.
  • DINNER:  For dinner I do not worry too much about calories…you still have 500 left in the bank, so I eat whatever is put in front of me!  But no dessert!  I have designated Sunday night as the only night I get to have dessert.

You might notice that I have no snacks listed.  You can snack if you feel you just have to, but if you can hold out without, it is best.  I personally don’t snack between meals because as a Diabetic I know my body is trying to get my blood sugar back to normal between meals and so I don’t want to risk raising it for a snack.  Plus it’s more calories.  I am not saying this diet is pleasant at all, but it does deliver the results…and I have found myself motivated enough to want the results more than I want the snacks!  And THAT is the key!  So good luck fellow Charcoter’s!

-Cassandra, Charcotchacha copyright 2015

CHARCOT FOOT AND NEWTON’S LAW

“For every action, there is an equal and opposite reaction” – Isaac Newton

And this must be what is happening to my knee!  This is to say that by not walking too much on my good foot (and trying to prevent it from Charcoting like the other), I am probably blowing out my knee, instead.  I scoot about the abode in my transfer wheel chair because it is so much quicker and easier than the walker.  Plus it allows me to carry stuff in my hands or lap as I push myself along with my leg.  But there is always a consequence, a trade-off…and the pain in my knee is confirming that!  It seems it’s a damned-if-I-do, and damned-if-I-don’t kind of situation.  I joke to my mom that I’ll finally get back on my legs and walking, but then my knee will blow out!  Or my hip, which also gives me occasional grief.  Incidentally,  I have read that sharp hip pain (just like the kind I get) can also be a form of Diabetic neuropathy.  Sigh!  And too, a consequence of sitting all day is that your bones get soft and your muscles weak.  I have been trying to counter this with regular bits of exercise and making it a point to stand and use the walker every hour or so to get good circulation.   I had read about something called “Disuse Osteopedia”, which is caused by a variety of things, among which “Non-weight-bearing” is one of them.  So of course I had a freak out, and my doctor ordered a bone density scan.  I was so relieved when it came back completely normal, whew!

So my advice to those of us doing the non-weight-bearing, is to try to mix up your mode of transport.  Don’t rely too heavily on one method, as it might start to do joint strain and damage.  Switch back and forth between walker and wheelchair, for example, or knee scooter and walker, etc.  Don’t let over-use become an opportunity for injury!!  Stay strong, fellow Charcoter’s!

-Cassandra, Charcotchacha copyright 2015

UPDATE ON “BROKEN BEAK”

crows

 

You cannot tell from the angle of this photo that I took today, but this is an image of “Broken Beak”  (whom some of you may know from a previous posting of mine titled “The Beautiful Subtleties of the Sedentary Life”).  That is Broken Beak on the left, departing from just feeding her (his??) two new baby crows, whom I have named “Heckle & Jeckle”,  ha ha!  Not to make you gag, but (gag alert!) I spotted Broken Beak just moments prior feasting on a poor ‘ol Mole he either found or actually killed, in the yard.  So, half a beak missing, be damned! This crow knows how to make a disability into a functional reality.  GO CROW!

CHARCOT FOOT AND PRE-SURGERY COOTIE FREAK-OUTS!

If anyone is going to cootie. Freak. Out. it is me.  In fact…(without boasting, of course), I am rather proficient at it!  I am especially adept at Connect the (cootie) Dots,  which is the expert Cootie-Freak’s way of following a potential trail of cooties, and connecting them to other trails of potential cootie-ness!  An example (for you beginner cootie-freaks), a basic connect the dot is bathroom cooties that could transfer to the bathroom doorknob….and from the bathroom doorknob to wherever the last doorknob handler next puts his/her hands. This is how the Cootie-Freak thinks, and I am taking you along into her mind!  Buckle your seatbelts!

So, ok….now that you have a brief glimpse into my mind, you now can imagine how upset and classically cootie-freaked-out I was when I found out that, (at just a few more weeks to go pre-surgery) my dad was expecting a visitor whom had just months prior been in the hospital and had contracted MRSA.   A.C.K.!!!  I had to go into Freak-Out mode and plead my case to my dad just moments before his visitor arrived.  Since the visitor was only picking something up, Dad decided not to invite him inside…but explained to him the reason and my fears.  Gee, thanks a lot, Dad!!  It is not easy being a Cootie-Freak, for sure!!

As you know from one of my last posts, my surgery had to be rescheduled due to what was erroneously assumed was a bacterial infection…I surely do not want to have any further delays for this surgery.  The surgery I have now waited 7 long months for!  I’m borderline obsessed with being cootie free and have added hand-sanitizer to my normal handwashing regimen.  For myself and all others awaiting their foot reconstruction surgery, I recommend staying home, pre-surgery, as much as possible so as to avoid other peoples cooties.  Just for 3 weeks prior, and 2 weeks post.  It’s all about limiting the field of bacterial reach, as I see it.  It may be overkill, as some have suggested to me…but it is my belief and one I suggest we all follow!  And remember, a professional Cootie-Freak never gives bacteria a chance!  Stay safe my fellow Charcoter’s!!

-Cassandra, Charcotchacha copyright 2015