May 2015 – charcot cha-cha

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!

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!

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!

UPDATE ON “BROKEN BEAK”

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!!

CHARCOT FOOT AND WEIGHT LOSS

Well, the facts are really basic…the less one weighs, the less pressure and stress on your newly reconstructed Charcot Foot. It is very important for all of us going through Charcot Foot that we try to get our weight down so that our feet will be able to carry us without re-Charcoting!! As I myself am currently about 60 pounds overweight, I have quite a task before me in trying to shed some of those pounds. I have to say I feel rather lucky, however, in that my weight gain since my Charcot Foot diagnosis is only 12 pounds. I think alot of us going through this may have moments of being guilty of “comfort eating”. What, with all the time we spend just sitting, and a lack of real exercise, it’s practically inevitable that there will be weight gain! So for my 7 months of sitting, I am ok with the 12 pounds weight gain. But now I want it to leave! My reconstruction is coming up, and I’ll probably be attempting to use the foot in about 4-5 months (if all goes well!), so I really want to be my ideal weight by then! That’s about 10 pounds a month. It sounds do-able. I’ve made an attempt in the last two weeks, and haven’t lost a single pound! So now it would appear I will have to do a nearly total reduction in food intake. It is extremely important, however, that I keep my blood sugars stable, and avoid going too low. I will have a minimal amount of calories and carbs for breakfast and lunch, probably around 60 calories and 10 carbs per meal. Then, I will eat a regular meal for dinner. No dessert! I’ve been eating dessert every night because I notice it hasn’t upset my blood sugars too terribly. (I had a 5.8 A1C last visit!) But now, I really must trim the dessert down to just one night a week. Boooohoo, oh well. It’s really all because of the inability to exercise. Oh how I miss being able to be active! It assists weight loss so nicely, it is very sad I am not able to have that assistance now. There are exercises that we can do to help keep our hearts pumping smoothly and prevent blood clots (from all the sitting time)…I suggest you read my blogpost titled: “Bend, Flex, Squeeze and Move Move Move!” for idea’s and inspiration. Hang in there fellow Charcoter’s, wether you decide to diet, or restrict some of the comfort eating. It is not easy, but try to stay strong and good luck to you!

WHAT I’M LISTENING TO!

Though I really like listening to what’s playing on the radio now, (for instance the Eminem and Sia collaboration “Gut’s Over Fear” is an amazing piece of music, even though it’s a year old!) it’s fun to revisit music from the past. I was a heavy-metal maiden back in the day, but will probably not relive that genre, though Motley Crue is still a favorite, and when I take my ’80’s Toyota 4 X 4 on the road it is a requisite listen! When the New Wave generation of music hit in the late ’70’s and into the 1980’s, I was rolling right along with it, infused with a musical enthusiasm I have never quite matched since. The B-52’s first album was a huge turning point in what I was listening to, which had been the basic rock n’ roll of the time, as well as quite a bit of disco (remember, it was the late 1970’s!). Another band that really influenced my music and style was Devo, and I have been getting back into listening to that lately. “Ton ‘O Luv” is my favorite from them as well as “Beautiful World”, and I love the backbeat in the remastered “Jerking back and Forth”. Another favorite of mine is Gary Numan…you may only know of him from his one hit, “Cars”…but his repertoire of music is really quite good, if you like electronica. He’s come out with some new stuff, and his “Love, Hurt, Bleed” is pretty good stuff! I went through a dark period in my musical tastes 20 years or so ago, and really got into Hole. I think Courtney Love’s vocals are the most intense and hardcore , and every song she sings I totally get, and it get’s me back!

I have found that listening to music during this period of dealing with my Charcot Foot has really helped to keep my sanity…it keeps me grounded in that it reminds me of who I am. As my whole world has been turned upside down by not being at work, staying at my folks house, not being able to walk…the music helps to keep me going. So go out and get yourself some headphones and jam to your favorite tunes, my fellow Charcoter’s!!

CHARCOT FOOT AND THE S.S.: Surgical Setbacks!

Well, I was just about set to write all about my surgical jitters, as my surgery was within a fortnights reach! But….sadly, I have had a disappointing setback that has caused a delay of 4 to 5 weeks! ACK! Well, turns out I am one of the lucky third of the population who colonizes the staph bacteria in their noses! W H E E ! And to add the cherry to the top of the pie, I have a little skin irritation in the…er….nether region. And, story short, I chose to open my big mouth and mention it. Holy Crap! It’s halted everything! And the story doesn’t stop there, turns out I had to show this to my infectious disease doctor…(does the humiliation ever end??!!) Worse fears realized, have to postpone my surgery date. sigh. Worse part is, is that he had me re-schedule because he was sure my irritation was due to the staph that I manufacture in my nose (you should see my little factory workers scurrying about trying to make the daily quota!!)…but two days later (after I had rescheduled everything, mind you) it turns out my culture/ swab came back negative for staph…just had the old regular skin flora. Could have probably proceeded with my surgery! Perhaps, the original surgery date wasn’t a good line up with the sun, the moon and the stars, or something. but I have come to realize that life has many roads, many paths…and for reasons we cannot understand, we are guided hither and there along these paths, and you just have to go where they take you! (Still…did it have to humiliate me along the way?!) Oh well.

So if you are facing an upcoming surgery yourself, just be prepared for a few bumps in the road, and try not to let it cause you to have a meltdown…as my dad is oft to say “This too, shall pass!”.