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TWO STEPS FORWARD AND ONE ST…er fall, BACKWARDS!

My physical therapy is coming along great! But I did have one fright that had me thinking I’d ruined everything! I was in the bathroom and had the walker off to the right side as I fumbled with my belt. I wasn’t wearing my big clonky boot so was standing on just the right foot…I started to lose my balance, and, you ought to know, that once you start “timbering” (falling over like a tree!) you need to grab something QUIK!! Well, since I was (rather inconveniently) falling in the opposite direction of the walker, I grabbed the next, nearest thing, which is this little shelving unit that holds cutsey toiletries…but IT started to fall over too! So, I did what was natural and instinctual and plonked my left foot down, hard, in an attempt to stop the fall. My recently reconstructed foot…my foot that I am only allowed to put 50% of my weight on. Yeah, THAT foot! I immediately went “ACK!” and stepped off it again right away, which sent me off on my way to complete the mission: FALL! Sigh. Of course I landed on this little ceramic jar that broke in the fall and scratched and bruised the hell out of my thigh, but I only had one concern, my foot! What if I re-broke the bones??!! What if I broke some of the many screws that are setting the bones??!! It was Friday night, so of course I had to live in tormented wonder till Monday morning when I could get in to have X-rays taken. THANK THE LORD, everything looked fine! I cannot tell you what a relief that was! I was thinking how awful it would be for my foot doctor if I ruined his superb work with one miss-step! How awful for me, too, of course, if I had to start all over again, with what? Another surgery, or perhaps have to have the amputation after all? Well, those were my thoughts all that weekend, as you can imagine! But I guess it is like my mom said, my foot is tougher than I think!

My therapy is going really well though, and my therapist had told me I could walk, with the walker, about 20 feet a day. But I am like a locomotive, “full steam ahead”, so naturally I went for about 80 feet. Then one day I took my nephews to go feed the ducks and decided I would walker along the path…to the tune of about a 1/4 mile! Yeah! Can you even imagine I would finally come to this point where I am actually walking along? Albeit, it is with the walker, and I am terrible slow. And I have to off-put most of my weight onto the walker, and not my foot…but how freaking miraculous! You too my fellow Charcoter’s, will reach this point in your progress, too! If you follow all the rules, and make sure you really stick to the non-weight-bearing while your foot heals up, that is!

Next week they are upping my weight bearing to 75%…and a few weeks later, full weight bearing! I cannot even imagine how that will feel, I am scared as hell of doing it, afraid to re-break my foot. But, all this weight-bearing that I am now doing has been making my foot stronger, actually…so hopefully all will go well. I will keep you posted!

PUTTING ON WEIGHT….The GOOD kind!

On my foot, that is! Yes, I have finally started my physical therapy! A part of me wants to say “whee!” but of course there is a lot of work involved. I got a young therapist who seems to joy in making me go the extra mile (mile? I wish!) but that is his job, to push me! My doctor has allowed me to start off with putting 25% of my weight onto the foot…so I am actually now taking real, actual steps! But I must use the walker and be sure to put most all my weight onto the handles and not my foot. This part is tricky, and while at therapy they have a computer program and device they put under your foot (in your walker/boot) that is actually able to measure how many pounds per step you are putting on your foot. At home I do not have this, but I am only walking 40 feet or so once a day. Next up is to take some X-rays to check to see if my foot is holding up well with this newly added stress, Hopefully there are no re-broken bones in there!

Most of the therapy involves working my foot muscles, mostly in the arch area as this will strengthen the area that is so vulnerable and holds all my screws and hardware from the surgery. He also has me doing exercises to strengthen my leg and hip since they have become horribly atrophied this 12 months of non-weight-bearing and will require these muscles for walking. My therapist also got me into the swimming pool once…which was enjoyable, but was such a logistic nightmare for me, really. Only because I am very chore-lazy, and the pool represents a lot of clean up work afterwards! I tried to take a shower afterwards in their dressing rooms, but it was hard to get up out of the wheelchair and under the water (didn’t want to get the chair wet!) I wasn’t at all into taking off my suit and fully bathing and getting redressed in front of everyone else, plus it is hard to get fully dry and pulling on choners (undies!) and pants half dry is a real bitch! So that meant I had to drive home in my wet suit, with towels on the seat….then once home have to wash out the swimsuit, have to wash out my water shoes (I insisted on wearing them…don’t want my feet to touch the pool or locker rooms!) Have to wash my feet, then have to wash my body, then have to wash my hair….A C K!!! You see what I mean? Though the pool was fun, (just doing leg exercises in the deep end) it just is more work than benefit, I think. Fortunatly, (though not really……) my little pinkie toenail decided to just come off (Doc isn’t sure why…probably neuropathy related and I may have loosened it in the pool and accidently tore it off with putting on a sock) but this bought me therapy out of the pool till the pinkie healed up, lol! The next hurdle is insurance related…they only approved me for 8 sessions, in a month long period, ending on a certain date…the rehab place took awhile to schedule me in so only got in 4 sessions before the end date came up…so now they have to request more therapy, get approved by the insurance, and reschedule me for more sessions. But it’s turning into a 3 week wait…all I can do in the meantime is keep up my exercises my therapist gave me and practice them at home. I will keep you updated!

I wheelie, wheelie hate the wheeled life!!

ARGH the wheels!! Like I mentioned in a past article, I thought I was being really smart by purchasing a wheeled office chair to scoot myself about the condo…And it worked really good, sorta, for the first two weeks…then a wheel fell off! So then I bought another chair. But although the wheels were faster, they refused to go straight!! For every 10 inches of forward motion, I would have to make an adjustment in my direction! It was going to make me lose my marbles, so I finally bought another transport chair. The wheels are silent and I know that makes my downstairs neighbor happy. And without having to correct my path, I can wheel into the other rooms very fast. Am still stuck with the super irritating front wheel drive, which means for every inch forward, if you want to suddenly go back the big 7inch wheels have to do a reverse, and they bump into everything in their path!!!! All stuff that adds to my already unstable mindset!!!

And don’t talk to me about trying to wash your hands in a wheelchair…water running down your arms to your armpits…super argh!!!!!! Putting your food or coffee in the microwave?? Have to stand up to do it! Cooking on the range is the same trouble…have to lift up the shoulders to do any of this stuff, which makes the shoulders scream at night when you want to sleep on your side.

Well, this is just me Bitching and moaning, which I am really adept at! I know that all of you other Charcot sufferer’s can totally understand what I am talking about!! The good news is that hopefully your condition is temporary, and you can move on to greener pastures! So hang in there with all this wheel crap!!

CHARCOT FOOT: BAD DAYS AND GOOD DAYS!

For all of the thousands of Charcot Foot sufferers around the world, remember that for every bad day, there is a good day just around the corner! For me today was a good day, but it had a lot of frustration because I had four stops to make on my errand list. For those of you who are semi-mobile like myself, (that is, can drive and get your wheelchair out of the car), or are using crutches or a walker, you know that stops = WORK. Especially if one is a place you’ve never been before. Today I had to make a stop at my insurance agent, and the parking lots handicap “ramp” was about as narrow as the wheelchair and had a big uplifted crack which stopped my wheels. Then there was a step up into their office…fortunately my friendly agent whipped me up the step with ease. But it’s scary and a tad embarrassing all the same! Then I got frustrated at the grocery store, because I wanted to do the self checkout so that I could load my own bag…(I get tired of telling the clerk or bagger to try to get everything in one bag…”ALL of it??!!” is their usual reply…but it’s imperative because I can only handle one bag, I don’t care how heavy it is!) But then I couldn’t read the screen from wheelchair height, and typing in the codes for produce was a challenge…I had to rely on my 10-key knowledge to guess the number pad….oops, the avocado rang up as a cheaper banana!! (don’t tell anyone!)

Well, the whole affair gets me so frustrated sometimes I want to tear-up a bit…but by the time I get back into the car and the music is happening, I am back to my chipper self. It is just extremely hard being disabled, every task is about 4 times more complicated that it would be otherwise. We just have to remember that it is important to not get too stressed over it, because stress is very unhealthy! So hang in there fellow Charcoters…try to stay cool while the summer heat hesitates to go away, and remember to keep your chins up…a better day is coming along!

GET YOUR NOODLES WHILE THEY LAST!

Just thought I’d better remind those of you who might be using my advice to use pool noodles on your walker handles (to reduce calloused palms!) to get out there and buy 6 or 7 of them while they remain available for purchase. Summer is wrapping up and stores are reducing the price on the noodles because they are about to pull them from the floor, and you will not be able to find a noodle for nothin’ through the upcoming holidays! Probably won’t see a noodle till April of next year….so snatch them up! The .99 cent store has some…dollar tree….lowes has them on sale too.

THE POWER OF NEEDING AND WANTING TO HELP OTHERS

This disability I am suffering has been a real eye opener. It has shown me that I am as independent and resourceful as I always knew I was…There is nothing I cannot do for myself if I want it bad enough and am very determined. I am always taken a bit back when I am out and about and someone (uninvitingly) offers to assist me. This will happen to me 3-4 times a day…almost at each stop on my errands. I always decline their help because the truth is I do not need their help. Truly, I’ve got the whipping the wheelchair in or out of the trunk down pat, and I am not a lazy person at all, so to sit back and let someone do the labor that I have no trouble doing myself is just…weird, to me. I think that expresses my feelings perfectly.

Occasionally I will seem to have hurt someones feelings by denying their help, like the gentleman today who kept insisting on helping me, whose efforts I rebuffed over and over. I felt as though perhaps I offended his sense of macho or something, by being a woman who clearly does not need the assistance of a man. I mean, that’s his issue, not mine. Right?

But then, later today, I had a bit of a revelation. I am not one bit above asking people for help if I want or need it…(I just rarely need it) I was in the grocery store, and I turned down the liquor isle, and I already knew that what I wanted was a can of beer on the highest shelf, and I didn’t want to have to brake the wheelchair and step up to try to reach it, so I checked out the bodies in the isle…I watched a few exit the end of the isle before I could get within asking distance…but there was a little gal in her short shorts, so I said “excuse me, could you help me?” She surprised me by being about 60, but what really surprised me was how THRILLED she seemed to assist me. I struggle to describe it really, because it’s almost embarrassing to realize, but she was nearly beside herself to have been able to give me a hand. I thanked her for her help, and she was like, no, thank YOU…it occurred to me then and there, that a lot of us tromp through life, and wish for something, anything, to give us a purpose, or a meaning, or a chance to be closer to God…and it is now my feeling that for some people, they really need to assist others, and if they don’t find that in their day, or life, it bums them out. Maybe that was why that woman was so grateful to help me…she was in a deficit of assist, and was so relieved I came along!

Perhaps I shall make an effort to allow people to help me, even though I do not need or require it, just so as I can allow them to fullfill their need to help others. It will be very hard for me to overcome my standard “Oh no, I’m fine, thanks!” reply…but I can see now that it is a way of sharing love for humans, and sharing this love makes this world a whole lot better, doesn’t it!!??

THE WALKER TENNIS BALL BLUES….

Tennis balls on walkers…

Ok….back home, great! But my walker tends to make some loud noises I do not want it to make! At my folks house, it tended to make some snorking noises the first few feet from their master bath, and then it would stop…..but back at the condo it is doing it Every. Other. Step! I abhor making loud noises of any kind, so it is utterly horrifying to me! So, have to kill that sh*t right away! I bought some tennis balls, in the hope that this is the secret to squelching this annoying sound, and proceeded to watch some Youtube video’s on how to put tennis balls on walker feet. What a JOKE! Not one video mentioned how totally hard it is to get the dang ball over the end of the walker foot. NOT ONE! It’s all about “cut an X in the tennis ball, and insert onto the end of your walker foot”…..like it was a breezy walk in a park! No no, let’s get real now;…you need 4 hands, so you can open the tennis ball in the opposite direction it was designed, two hands for East and West, and two more for North and South…and then whilst you have all these flaps (that you cut) open, quickly try to make an attempt to shove the entire affair over the end of your walker foot! Oh wait, you need a fifth hand for that…but, Quick, quick! Oh, did you move too slow? Me too! S T A R T over! Seriously, a video that states exactly how hard it really is would have been sooooo appreciated, but they all act like it is so easy to do, when it clearly is not. So, just so you know, it all about the truth here on CHARCOTCHACHA!! I am reporting this stuff as I learn it so that you can have a heads up!

HOME AGAIN, JIGGITY JIG, JIGGITY JIG!

Not sure where that is from, I think “The Three Little Pigs”…but anyhow that is how I feel, because I am indeed, back home again! Home and….overwhelmed! Nearly a whole year away from home, and I am now faced with stuff from a past life, actually. It is a bit surreal. My mom, (bless her soul,!!) has kept all my plants alive with her weekly visits to water, but last years spilt soup on the stovetop? Still waiting for me. So, it has been a week home of go-go-go, no WAY I could just sit back and relax. I actually have had more exercise in the last week than in the last 10 months! Which, would be great if I still were sticking to my 600 calorie a day bit…..but something about being home, now I want to E.A.T.

“I might get there faster if I just sit still and let the world rotate underneath me”…..

Ok, I just made that quote up, but it seems like it might actually be a bit quicker than my current method of mobility, which…is seriously lacking in it’s ability to get me ANYWHERE! (Oh, could you tell I am just slightly miffed about mobility? Well, it is sort of my own fault)…I had this “brilliant” brain fart of an idea…which should have been okay, but sometimes reality is not. I had been zipping about in my parents house, and later in the neighbor’s cottage in my transport wheelchair…it’s great for giving one the ability to get from A to Z relatively quick and easy, but with one serious drawback. (Or…a drawback to my “easy-to-irk” brain, that is!) The steering is in the two front wheels…if you scoot 2 inches forward, and impulsively want to now back up 2 inches (and this happens allllllll daaaaaaay long, BTW) your chair now has to spin those front wheels around, and they BONK INTO EVERYTHING within reach, duh, but life seems like damn near everything is within reach of those wheels! They bump into everything and cause massive 4 letter utterances to emit from my mouth, Lord have Mercy! So! Ok, deep breath, and let’s try to get smart about this, (I said to myself)….I sure as heck am not going to haul upstairs (and downstairs) my transport wheelchair everyday of my life, and there is really no need or point to purchasing a second one…so, HEY! I will purchase for myself a little, chic, white office chair for upstairs….it has two armrests so I can easily lift myself up, and 5 little wheels on the ends of a chic chrome base. Yeah! (Damn I am so smart, can I produce and sell this smart stuff??? ) Ok, well, don’t invest just yet….the chair I bought sure looks cute, but the minute I sat my considerable behind on it, I noticed it felt like I was sliding forward. The cheap chair actually is sloping forward and down…just slight enough to cause me to constantly pick my ass up and shove it back into the chair…and to make matters worse? I shoved off in eager anticipation, and went….about 2 inches.“ANCKHH!” (Epic fail noise) The wheels are not “easily maneuverable” like the ad said…my floors are polished granite, so with a good shove and a good chair, I should get about 6 feet of ground covered….this chair only gives me about 10 inches! Oh well, with any luck I will not be needing the thing much longer, right??!! (It is giving me a great stomach muscle workout, though!)

But it is so good to be back home…I’ve had so little idle time, and I am just amazed at what I can get accomplished (grocery store? Target? No problem!) and what I cannot accomplish; Take out my trash? Forget it, too hard. That’s what friends are for, though! 🙂 My washing machine decided it would not operate so hauled my clothes to a launder mat…then my neighbor fixed my washer with the reset button! (that was a cheap repair!) A cop car or ambulance broke the still of the morning today with it’s siren and was immediately followed by about 20 howling dogs of all size and shape for about 15 seconds and then dead silence again. Ha ha, I love my neighborhood!

Well ok, just wanted to give this update and let everyone know I am alright and enjoying being back home. I see the Doc this week so we’ll see what he has in store for me! (gulp!)

BUMPS IN THE ROAD!

Well, a few setbacks…my stairlift was supposed to be installed last week but someone measured wrong, so they didn’t have a long enough rail. I am so eager to get home, I can’t say it enough! My lovely little cottage has just gotten so small and there isn’t much to do there, so at home I can start painting again and sewing and going through my stuff. It is vital to stay busy! My doctor wants me to start light weight bearing in a few weeks, and I am scared stiff about my foot re-collapsing, which it can do at this stage. My foot looks really good though, all the sutures have healed and my foot is starting to look like a normal foot…it’s even starting to get an arch back, I think. I fell ill with some sort of gastrointestinal thing that left me wracked for 24 hours, but I am on the mend! Not 100%, but so much better. So, that is where I am at right now…sorry I am not being very forthcoming with info and insight, I am still feeling a bit under the weather. Hopefully next posting will come from HOME!!

SWEET FREEDOM!

Well, after several toads, I found a prince of a vehicle! It’s a sporty hatchback with just 72,000 miles, and it comes with features I’ve never had in my 40 years of driving cars, a moon roof and electric windows! No more struggling to unroll windows whilst barreling down the road!

Something one probably doesn’t think about too; when we Charcoter’s (Charcot Foot sufferer!) are tooling down the breezeway in our car, we are the same as everyone else, and our disability disappears! When driving about, I am just a normal person without a handicap, and it feels so good, so free.

It’s just a matter of weeks now before I head to my own home for the first time in 11 months, and the combination of that plus the freedom of the new car is making me very intolerable towards my disability…every aspect of it is frustrating me and pissing me off! This is something I suspect we go through after a certain amount of time…a restless, stir crazy kind of angst. I hope that I will be able to walk again rather than face a bone failure, because I honestly don’t know if I am capable of doing this all over again! Time will tell.

For me and all my fellow Charcoters, it’s one day at a time, hang in there and pray for miracles!