Always Disappointment, Never Contentment (well, a little. . .)

So, Thursday I visited 'the mad scientist' for my 11 week post-op check-up.  I had been feeling so good the past two weeks that I came braced to win him over with my "I'm gonna walk outta here in sneakers" argument.  Before he even entered the room, I had unpacked my shoes and put them on the floor beside my bare foot as a visual reminder; I was prepared!

Luckily over the nearly two years that I have been Dr. W's patient, I've been able to train him on how and when he should listen to my pleas, so it didn't take too much case-making on my part.  However, even as late as a year into our relationship (and yes, I call it a relationship because we really act more like an old married couple now than we do a doctor and patient), he would still peer over his clipboard with his all-knowing arrogance (even he won't deny he is arrogant) and tell me how he knew best and how I should only follow his instructions.  We've come a long way since then. . .

So to celebrate the "balancing act of expressing all the excitement of walking with not overdoing it" and the wedding I am attending in two weeks, I decided to attempt a "pretty shoe" shopping excursion today; a first in a long time.  I had my morning perfectly planned!  I rose early, knowing that I needed to try on shoes early in the day to avoid major swelling (or else there was no hope of even getting them on) and of course the large crowds at the store.  Needless to say, my plan was foiled on both accounts.  It only took a matter of minutes for the right ankle to become the size of a grapefruit while I stood in the kitchen making my pancake breakfast.  I did manage to constrict the swelling a bit with an ace bandage, but by the time I had eaten, showered, and dressed, it was nearly 12pm and I was running late!

I arrived at DSW shortly after noon and the store was swelling with springtime shoppers.  Today was the first day of really good weather this season so everyone was out (everyone, their babies, their dogs, and their cousins, that is).  I strolled the sandal aisle dodging fellow shoppers here and there in the hopes of finding an open-toed beauty that would both match my brightly colored dress and also have enough room for my larger than life foot and tightly wound ace bandage.

After a few attempts, I quickly figured out that my only viable choice was a glittery pair of thongs.   And, I wasn't prepared for one minute to pay more than $40 for a pair of thongs!  So, after shoe style reductions and price restrictions accounted for (making a choice truly is easier when your selections are narrowed down for you, wouldn't you agree?), I had found two pair that I could actually fit my foot into and that seemed to be a match for my dress.  I took the boxes and walked over to the register line.  Unfortunately, I had to keep walking and walking (well, limping and limping) because it appeared that the line was now wrapping around the entire store!  Knowing there was no way that I could stand in that line long enough to pay for my purchase, I had no choice but to leave without anything in my hands . . .

Reluctantly, the pursuit continues . . .

The Open Road . . .

I continue to feel good in the boot, really good. . . I took my first post-surgery trip this week to Toronto for business.  Luckily, the flight is only a short hour from New York, so the swelling remained low.  I opted for wheelchair service, not because I can't walk well enough, but only because the Toronto airport, with its long hallways and distant gates, could probably be considered training grounds for marathon runners. . . in fact, their wheelchair transport staff seem to be in training for a relay event.  I felt like a baton being passed from driver to driver around every new corner and elevator bank.  It took 4 different persons to bring me from my gate to the customs arrival area!

After a long delay at La Guardia and lots of sitting and waiting between relay runners at Toronto, I finally made it past customs and out to the rental car desk. . . yes, I was not only taking my first flight post-surgery, but I was also going to attempt to drive a car for the first time--in a foreign country no less!

After chanting to myself non-stop for the previous 24 hours "don't forget to pack your right sneaker", I dug it out of my suitcase, laced it up, and climbed into the Ford Focus.  "Well, let's see how this feels" was all I could think to myself as I started the engine, gave the car a little gas, and backed out of the parking space.  And, as I entered the highway and reached higher speeds, it turned out I had nothing to fear after all. . . my foot was strong and I felt confident the entire time I was driving, even in stop and go traffic.

God, I miss driving!

Walking on Sushine

The last few weeks of living in the boot have been relatively easy.  Knowing exactly what to expect this second time around has definitely helped to keep my patience in check, but overall the healing process has been both faster and easier on the right foot too, keeping my happiness meter tilting all the way to the right as well!

With the left foot last year, 'the mad scientist' had instructed me to use crutches for the first two weeks in the boot to gradually increase my weight bearing, enabling me to walk the third week without any assistance.  Things did not go as planned. . . I was in so much pain that third week that I eventually had to go back to the crutches again.  In preparation for this same scenario, I informed him that I would be going for the full three weeks this time around.  But, it turns out I didn't need to!  Thanks to some mentoring from my fantastic new therapist John, I successfully trained my foot to hit the ground after only two weeks!  I'm continuing to use the cane for longer jaunts outdoors on the hard concrete, but for all intents and purposes, I am walking!

I'm continuing my therapy sessions and we've had a few breakthrough moments this week like picking up marbles with my toes!  Exciting, I know?!  (Well, it's exciting for me anyway . . .)

Most Definitely Blog-Worthy . . .

The day finally arrived yesterday to have the cast removed--yippee!  And, the day couldn't have arrived soon enough; I had been sitting at home Monday night after work and suddenly smelled something rancid.  After desperately searching the refrigerator and trashcan for what I swore was some seriously rotten food, I finally realized that it was my foot that was wafting something nasty toward my nose?!

Luckily the nurse was still hung over from a massive case of food poisoning, so she managed to locate a handsome resident to remove my cast.  After peeling off the cement and finally freeing my toes from their dark, humid chamber, I was in/out for a quick x-ray and examination from 'the mad scientist'.

All he could do was go on and on about how beautiful it had turned out and how that is how a foot should look!  And, I have to admit that once I got home and had the chance to scrub off all those layers of muck from the last six weeks that I couldn't believe what I was seeing!  It's absolutely gorgeous--the incisions are healing nicely and will probably have minimal scarring and the swelling has remained relatively low throughout this entire process!  (I would post photos from last year's cast removal  for comparison's sake, but I wouldn't want to frighten any of you; let's just say it was not a pretty sight.)  I can already wiggle my toes and rotate my ankle freely--I couldn't do that with the left foot until we had already completed 3 weeks of physical therapy?!  For whatever the reasons, this entire experience has been light years from what it was last year and I couldn't be more pleased . . .

Medieval Torture Treatments?--Surely Not!

So, yesterday we removed the stitches and set the cast.  I truly had mixed feelings anticipating this day. . . Last year, between tweezing 50+ stitches over 45 minutes and then attempting to push a swollen, broken foot upward into a 90 degree angle, I shed quite a few crocodile tears.  I knew the day would not be complete without a lot of pain, but I also knew that getting a cast also meant ditching that bulky, heavy splint and the prospect of more mobility (and showering, who wouldn't endure a few moments of discomfort for a long, hot shower, right?)  But, surprisingly today was easy-peasy!  The only torture I experienced were a slew of zingers Dr. W kept slinging my way . . .

In what seemed a matter of seconds, Dr. W's new surgical resident had removed all the stitches and was asking me what color cast I wanted?!  I opted for boring black.  (After all, I have to return to a place of business in a few weeks; I have to appear somewhat professional and the scooter and backpack don't help the cause any, believe me. . . I mean, I look more like a 3rd grader than a Marketing Director!)  A few minutes later and with dry eyes, I sat up, viewed my new cast and wiggled my toes.  And, the good news I told Dr. W is that I am already feeling better than I did at the same stage last year!

After getting myself up and wheeling myself out of the exam room, I asked him if I could go bother his assistant Karen (my other BFF, by the way . . .).  He bid me adieu by saying, "Yeah, just stop bothering me!  Will you just leave already?"  Did I mention that my appointment was nothing but an onlsaught of zingers?  But, even funnier than he was his entire staff today.  From the x-ray tech to the nurses, every person I encountered kept asking me, "Is this another surgery?"  Yes, indeed; it seems I have not had enough of his torture--either physical or emotional--yet!

Surgically Speaking . . .

Well, Tuesday, February 15th came and went without a hitch!  I was first up on the OR schedule at 8am, which meant a very early arrival at the hospital, but also a limited window of hunger pains! After checking in with the nurses, redeeming my frequent visitor rewards with the QA consultant, and getting a warm "welcome back" from the anesthesiologist (we've practically become BFFs after the number of times I've visited her operating room over the last year), 'the mad scientist' finally arrived to greet me at 7:58am.  I had joked with the rest of the OR staff that he wouldn't arrive until 7:59am, so you can imagine our surprise when he showed up so early!  Of course, when I saw him approaching my bed still wearing his white coat and carrying a pile of about 10 patient files, I exclaimed, "You're not even in your scrubs yet?!  Are you going to be the one to make us late today?"

Luckily he managed to make up time, shaving about 45 minutes off his normal procedure time.  I woke up in Recovery just in time to nosh on a tuna salad sandwich for lunch and to take a short nap--fortunately, I had just local anesthesiology, so I avoided all the awful nausea and exhaustion of last year's surgery!

By dinner time, they moved me to my room on the Orthopaedics floor.  And, with all the gym time I put in over the Summer and Fall, I was able to successfully lift and transfer my body to my bed all by myself!  The nurses continued to be amazed at my adept "bedpan" skills during the remainder of my stay.  But, despite my need for independence, they continued to check on me every few hours, making sure my pain was under control and my belly was well-filled during my stay.  I couldn't have asked for a more attentive nursing staff; they were amazing!

After a rest-filled night, Dr. Weinfeld surprised me with a quick visit to my room Wednesday morning before he left for the airport.  "Did you really think I wouldn't come and see you today?" he said as he entered the room.  He ordered me to return a week later to have my cast set; and, feeling virtually pain-free and full of energy, I was glad to be released home a few hours later.

New Beginnings

The new year has brought with it a renewed focus on CMT and my overall health.   I was fortunate enough to finally find a neurologist who specializes in neuro-muscular diseases in December and he's been making it his priority to identify all my symptoms of CMT, to properly diagnose me, and to also find ways to hopefully identify and suspend the degeneration rate.

We've done tests, then we did some more tests, and in the coming weeks, we're going to do some more tests!  13 vials of blood, 3 MRIs, an EEG, and a reflex test have finally and positively confirmed that my neuropathy is directly related to CMT and that my overall health is quite good.  My muscles are strong, my degeneration rate seems to be slow, and the surgery has improved my overall flexibility and ease of movement!  I could not have asked for a more positive report just one year after receiving the shattering and alarming news of my diagnosis!

So, this new beginning continues with plans for a genetic test to identify my unique strain of CMT and reconstructive surgery for the right foot!  Frightened that I would get too comfortable with the luxury of self propulsion and postpone the surgery indefinitely, I hurried to schedule it before I even had the chance to second-guess my decision.

So, come February 15, 'the mad scientist' will finally have the chance to begin the final phase of his "Perfect Podiatric Pair" Project and to help me get one step closer to finding that perfect pair of pretty shoes. . .

Can You Tell They're Fake?

Although the footsies have been feeling generally good the last few weeks, a new obstruction along the pursuit of pretty shoes has presented itself recently.  The padding on the balls of my feet seem to have broken down, making it painful to wear any type of hard-soled shoes and leaving me with the dread of walking long distances without my cushy sneakers?!

The 'mad scientist' did say with a bit of concern, "well, I am definitely feeling bone where I shouldn't be", but we couldn't arrive at a decision as to how to resolve the issue.  So, I visited my podiatrist while I was in So-Cal for the holidays and he suggested a few solutions like silicon implants, collagen injections, or padding inserts.  I guess years from now when all the surgeries are done and I can finally show off my pretty shoes, I can make two jokes:


"Well, I had my cankles surgically added." and "Can you tell they're fake?"

But It Still Hurts!

The swelling finally went down last week, but I was still having a bit of pain while walking.  I couldn't take much more of it, so I went to see my good friend Dr. W last week to get his opinion on the subject.  Luckily, after that whole stress fracture debacle in September and not believing me when I said I was in pain, he now listens to me every time I shout "Ouch!".

After touching several points on the top of the foot, the ankle, and finally the outside, I screamed and jumped off the exam table. . .

"OK, I know what this is," Dr. W calmly said.

"Well, that's good.  What do we do now?" I responded.

Apparently, scar tissue has built up and is pinching the nerve on the outside of my ankle.  He suggested two alternatives--try to numb the nerve with a cortisone shot or perform "another surgery . . ." to remove it altogether.  Yeah, I thought we should try the shot first.  It took a full week to make a difference, but I am finally feeling like myself again!

Anniversaries, Anniversaries, Anniversaries

I returned to the doctor today to follow up on my stress fracture, even though I had already taken it upon myself to stop wearing the boot a week earlier (I had decided that we were truly forming a co-dependent relationship and the stress of having to make it feel constantly useful had finally drained my energies enough that I had to call it quits for good . . .)

The x-ray showed the bones have healed, but we haven't reached the end of the road yet . . . Dr. W told me it will take another month for the swelling to completely go down.  So, with that in mind, he suggested we re-schedule surgery for mid-November.  Yeah, I looked at him like he was completely crazy--having surgery now would mean that I would be in a cast for both Thanksgiving and Christmas, without the ability to travel at all.  Luckily, I talked him out of doing anything until the new year.

I was about to leave when I realized that it's been a full year since we began this whole process with my first appointment . . . I absolutely adore Dr. W and feel so fortunate to have found him.  And what came next is a perfect example of why:

I said, "Do you realize that we've been together for a whole year now?"

The mad scientist immediately shot back, "Oh, I didn't get you anything."

"It's OK, I didn't get you anything either.  In fact, all I really want to do is divorce you already, but we still have this asset division that we have to figure out."

"Well, if you'll just stay with me for another 6 months, I promise it will be worth it."

CMT Awareness Week

CMT Awareness Week is under full swing . . . and, in an effort to shed more positive light on those living with it and to educate those who are living without it, the CMTA asked for members to submit their photos and stories.  That's me in the middle.  And, a few of my friends have also shared their story, including Lenka, Milena and Michele!  You can also hear Michele's story that she shared with Lenka this week in celebration of CMT Awareness Week at Lenka's podcast.

Two Steps Forward, Three Steps Back

Just when I was starting to feel really good and I thought things were moving smoothly, I was thrown back in the boot this month when that "unshakable pain and swelling" returned just a few days after we removed the stitches from the screw removal on August 3rd.

Unfortunately, 'the mad scientist' decided to take a three week vacation during the midst of it all, so I wasn't able to reach him until after Labor Day to finally get an MRI ordered . . . I kept telling him that I was in pain and that putting weight on the foot hurt way too much to be nothing to worry about, but my complaints fell on deaf ears considering he wasn't in the country to look at (or even think about) it!  Well, we finally confirmed today that all that pain wasn't a figment of my imagination!

Believe it or not, I've got a stress fracture across my 2nd and 3rd metatarsals (um yeah, you're reading this correctly; it's indeed the same foot).  And surprisingly, I couldn't be more relieved.  While I am definitely disappointed that I am now going to have just one more hill to climb and yet another ailment to heal from, I am relieved that this new one isn't something much more serious that requires further surgery. . .  and, I am also disappointed that the pending surgery for my right foot will now have to be postponed until the left foot can heal and eventually support by body weight, but I am truly trying to see this delay as an opportunity to learn a valuable lesson and to open myself up to the possibilities.

Viva la boot!

We're Getting There . . .

I'm back in bandages today after 'the mad scientist' removed that big screw/pin/bolt/thorn (I've come up with so many names for it over the last few months . . .)  from my heel yesterday.  All went well though, even if I am a bit sore today!  We decided to do local anesthesia instead of general, which was a fantastic idea--and it was all my mine, I might add--leaving me able to wake easily and without any of the usual discomforts of anesthesia recovery, like nausea and major fatigue (and nausea, did I mention nausea?).  The only thing I didn't get my way about was walking out of the hospital; the anesthesiologist left my foot completely numb, so I was forced to hop home on the crutches despite my repeated declarations over the last week!

I was first up in the operating room schedule, so after an early rise, I made it home just a few hours later, giving me the comfort of my own bed for a long nap!  Michele was in the city for her own doctor's appointment, so she and her boyfriend came to visit me in the afternoon and to take care of me for a few hours!  They brought me delicious Crumbs and we dished on fantastic Mexican take-out for lunch; I felt so loved!

Even with only five little stitches, I was given strict instructions not to get my foot wet.  But, that was all a wash this morning when I got in the shower.  Even with a plastic bag tied around my foot, I managed to get the dressing not just wet, but completely soaked!  Luckily, I had some gauze and tape here at home, so I quickly slathered Neosporin all over the incision and re-dressed the wound myself.  Now to rethink my shower routine for tomorrow?!

Things Are Not Always As They Appear . . .

I visited the hospital today to get some pre-op blood work done in preparation for 'the mad scientist' to remove the pin from my left foot next Tuesday.  When the doctor on duty started interviewing me and asking what type of procedure I was having, I stated that I had reconstructive surgery on my foot and ankle in January and that we were just going to remove some hardware from that surgery . . . when he asked why I had to have reconstructive surgery, I told him that I have Charcot Marie Tooth.

He was completely taken aback?!  He said, "Wow, you don't appear to be a typical CMT patient . . . and CMT is very rare.  How is that you were able to get diagnosed?  I mean, you don't look like most patients."

I explained that even though I appear to walk normally and to have full use of my hands, that I do in fact have most of the debilitating symptoms.  And, after meeting and swapping stories with other CMT patients over the last year, I think I'm finally able to pinpoint my personal level of suffering.

On a scale of 1 to 10 measuring the severity of symptoms, I think I am probably about a 4; I'm truly lucky and I will probably continue to have full use of my feet and hands for the rest of my life with the benefit of surgeries and medication.  But, even though I don't have symptoms that are life threatening, they are still prominent, limiting, and frustrating:

- burning and stinging sensations in the feet
- random leg twitches
- joint stiffness
- pain, numbness and tingling in the hands
- high arches
- painful calf muscles/leg cramps
- propensity for tripping and falling/clumsiness
- limited reflexes and sensation below the knees
- scoliosis (curvature of the spine)
- tilted pelvis

Have you heard?

CMT Awareness Week will be September 19 -26 this year.  Amazingly, this week long event will actually coincide with the 1st anniversary of my own diagnosis of CMT.  It's hard to believe it has nearly been a full year since this life changing news was weighed on my shoulders (er, my feet I guess.)  So much has happened this year, while so much has stayed the same.  The best event, however, has truly been the upgrade and ultimately the eradication of pain in my left foot.

I will be celebrating by finalizing plans for the second surgery. . . Right now, plans are to go under the knife again on September 28 in the hopes that I will be walking again in time for Christmas . . .

Working It Out . . .

Normally when I make a large decision, I study the pros and cons, I weigh the costs, and I research as much information as I can before deciding which alternative is the most appropriate.  But, two weeks ago, I thought it would be better to just dive right into this one before I could talk myself out of it . . .

I renewed my gym membership and immediately charged $1000 worth of personal trainer sessions on my credit card.  Now, those that know me best would be shocked to hear that I did this for a few reasons:  1.) I am a huge cheapskate and would never think about making such a large purchase without more forethought, 2.) Exercise has got to be in the Top 3 list of things I hate to do in this world, and 3.) I really dislike sweating.

But, since I started feeling better last month, I quickly realized that while my foot felt better, my overall health and stamina was still less than stellar.  Plus, with less than four months until the next surgery, I realized that I need to lose some serious weight and to strengthen my upper body in preparation for crutches again.  So, with such a hefty goal to achieve and a small window to achieve it in, I figured I needed a professional to help mold and shape me (literally).

What was most amusing during the sales pitch was the series of questions I was asked so that I could be matched with "my perfect trainer".  It went a little something like this:

"How long ago did you have surgery?"
"5 months ago."
"How long can you stand?"
"Comfortably?  About 20 minutes."
"Can you run yet?"
"Uh, no."
"Can you do any high impact?"
"No, I can't do any running or jumping yet."
"Can you do stairs?"
"Well, yes, but I am pretty slow; I wouldn't exactly classify that as a calorie burning activity."
"OK, we're gonna work on your upper body!"

So, after two weeks of being paired with Andrew, all he does is yell, "Crutches ain't got nothing on you!" to keep me motivated.  It's quite funny, actually!  He is determined to get me strong enough for the next surgery and to drop the poundage.  So far, he is succeeding; I am already down 7 pounds.  Although, today was a bit of a challenge as my foot was really swollen and stinging (um yeah, I am thinking it may be a stress fracture or another new ailment) . . . he ordered me to call the doctor tomorrow.  Let's hope the doc proves me wrong; I've got a vacation coming on Friday that includes hiking and biking in the mountain air!

The Pursuit Continues . . .

This is my newest and most expensive shoe purchase . . . tragic, isn't it?  These little ladies don't have any glittery sparkle or faux jewels, no peep toes to show off my lovely french pedicure, or even a colorful fabric bow!  After three weeks of desperately searching all over Manhattan for a decent (and affordable) pair of athletic shoes--accompanied by a bucket of tears from a multitude of painful attempts at shoving the swollen "ham hock" into shoe after shoe after shoe--I finally resorted to an online search for a shoe store that could offer custom fittings.

I finally found the Running Company today and visited their East Side store.  After explaining to them all the procedures that I have had, how much artificial hardware is now co-existing alongside my bone structure, and how my left foot is an entirely different size than my right foot, I had managed to get an active audience out of nearly the entire store's staff.  There were a lot of ooh's and aah's (and "Wows!"). . . what can I say?  I'm a small-time celebrity these days (or more simply said:  an aspiring carnie).

After all that, we tried on a few pairs before settling on this bright blue pair (OK, granted the grey trim creates a nice complement to the jewel tone).  One hundred thirty dollars later and I am the proud owner of a pair of running shoes that I can actually fit my foot into . . . not a pair that I truly wanted or that is comfortable for that matter (there's never really been such a thing as a comfortable pair of shoes in my lifetime, just varying degrees of discomfort.)

Sadly, the pursuit of pretty (and comfortable) shoes continues . . .

Some Days When I'm Awfully Low

Most days I am just fine: just fine with the career path I have chosen, just fine maintaining a part-time relationship with God, just fine that I have only myself to rely on for my well-being, just fine living a life without a soulmate, and just fine with the thought that I have a crippling disease that will rob me of my youth earlier than most . . . but, today was not like most days.

I made every attempt to carry on with the day, but no matter how much I tried, I just kept wandering in and out of emotional uncertainty.  I made a firm decision to attend church for the first time in four weeks, but only because I knew that I would have to miss it for the next upcoming two Sundays due to my busy travel schedule (not the best reason, but a reason nonetheless.)  Unfortunately, instead of giving me the comfort I desperately needed, it made me a mushy, teary-eyed mess!

All I could continue thinking about all day is that I just can't get what I need or want in any aspect of my life these days.  I was in pain from the moment I woke up this morning--the stress I have been feeling at work over the past few weeks shows no sign of reprieve and my body just can't take the long worknights any longer--and sure enough, I was full of anger by the afternoon at the sheer idea that I have CMT and all the symptoms that come along with it, not to mention everything else that isn't going my way these days.

After returning home from church, I laid in bed drifting in and out of a desperate crying session all afternoon.  I just can't seem to find the right solution to make myself feel more healthy and happy.  Do I quit my job and move back to CA?  Or, is it time for me to re-consider my career choice altogether?  Or, can I hold out until I recover from my next surgery?  If I decide to leave, can I find another doctor in CA that can do the job just as well?

Yeah, and then there's the question of what to do about the next generation. . . I had worked myself into such a mess by the end of the day that I could be caught reading about permanent birth control solutions on WebMD.com . . .

So Long . . . For Now

Today was my final post-op appointment with Dr. Weinfeld and the report was sunny all around:  He told me the surgery should be permanent and there will be no need for any "maintenance" work in the coming years; he also evaluated my right foot and decided that even though it is not as severe as the left, he would prefer to do "the works" in the hope that we don't have to bring me in for more work at some point in the future; he told me that the foot looks great, my toes have spread out nicely, and that my healing is moving ahead of schedule!

So, next steps are to schedule a mini-procedure to remove the pin in my heel and to then figure out when we're going to cut into the right foot . . . right now, it seems it could be the end of September.

He then ended our appointment by giving me a big hug!  So cute!  I guess we have been through a lot together in the last few months. . .

Practically Pain-Free in Every Way

19 weeks . . . 133 days . . . 3192 hours . . . that's how long it has now been since my surgery, but the pain I've been experiencing in my left foot has been even longer.  But that all finally came to an end today!  For the first time in a year and a half, I walked pain free today . . . I joked with my colleagues at work today that you could actually hear my flops flipping down the hall behind me!  Yeah, I can finally walk normally!  And, it feels so good to be normal again!