Monday, December 27, 2010

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?"

Wednesday, November 17, 2010

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!

Monday, October 4, 2010

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."

Tuesday, September 21, 2010

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.

Friday, September 10, 2010

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!

Wednesday, August 4, 2010

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?!

Wednesday, July 28, 2010

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

Friday, July 23, 2010

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 . . .

Tuesday, June 29, 2010

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!

Sunday, June 27, 2010

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 . . .

Sunday, May 30, 2010

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 . . .

Thursday, May 27, 2010

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. . .

Tuesday, May 25, 2010

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!

Tuesday, May 18, 2010

Bringing the World Together One Foot at a Time

I work for an international organization, so as you can imagine, I have to travel to international destinations as part of my job. . . and, I am sure you can also imagine how difficult lengthy, international flights can be for someone like myself who has had limited mobility recently.  Well, after a non-stop onslaught of "so, when does the doctor think you can get on a plane?" from my boss since January, I was finally able to successfully complete my first business trip since surgery last week.

I flew to Sao Paulo for a week of meetings and training with the staff in our local sales office.  And, once Michele found out I was going, she insisted I meet her sister Milena, a fellow CMT'er, who lives there!

Since Michele and I found each other in cyberspace a few months ago, we've grown to be good friends, sharing our stories with one another and being there to support each other through each of our painful surgeries.  So, you can imagine how excited I was to meet her sister and to hear her story as well!

Milena and her boyfriend Jesse picked me up at my hotel to take me to dinner at their favorite local Indian restaurant.  Just seconds after they pulled up in their car, Milena jumped out and rushed to give me a big hug; she just wouldn't let me go!  It was such a special moment; I think that we both felt like we already knew each other from everything that Michele had told us about the other!

We had a wonderful dinner filled with plenty of laughter; amusing Portuguese translations for Jesse, who sadly couldn't keep up with our "fast" talking in English; and touching moments of sharing our own experiences of diagnosis and struggles with CMT.  Our favorite finding:  both of us share the lack of a "knee jerk" reflex and we're the only two people we know who have this symptom!  The docs can bang all they want on our knees, but our legs will not kick . . . and, we can tell you why!

Milena and I agreed (and we're confident that Michele would have also agreed if she were with us) that we're so lucky to have found each other . . . thank goodness I found Michele's blog and cyber-stalked her until she agreed to become my friend!  And, as painful as it has been, my foot is moving beyond borders and bringing all corners of the earth together (so it seems).

Monday, May 3, 2010

For The Love of Mass Transit

Oh the weather outside was sticky, so I really couldn't be picky. . .
The bus was nowhere in sight, so I thought I'd risk a ride . . .

Risk a ride, risk a ride, risk a ride!

What began as a reluctant choice, turned out to be an unanticipated achievement! When the sticky downpour prevented me from finding a cab this morning and the bus was nowhere in sight, I was left with no other choice but to take the subway today.

But, I did it! I was able to tackle all those pesky stairs and make it to my destination safe and sound (without anyone stepping on my toes)! Finally, after four long months, I can safely ride the subway with all the other perfectly healthy, if harried, New Yorkers!

Friday, April 30, 2010

I Was in Stitches

Last night while getting a nice relaxing massage from the physical therapist, she said to me, "I think you might still have a stitch in your foot.  I can feel it."  And, after she rubbed over the scar a few times, I could feel it too.

After grabbing a needle and a pair of tweezers, I was able to quickly release the laden string from its three month hiding spot on the first try.  When I had felt it under the surface of the skin, I really thought it would just be a little nobbin or a microscopic piece of lint. . . low and behold my shock and awe when I saw that it was nearly a 1/4 inch long!  How this little piece of nylon managed to stay below my skin for so long without causing an infection or wiggling its way to the surface independently is beyond my understanding?!

Wednesday, April 28, 2010

Like White on Rice

Well, it's Day 14 of "self propulsion" or, what you ordinary folks call walking.  And, while it's been a tremendously positive mental shift to be fully upright and somewhat independent, I am still facing a heap of challenges on a daily basis.

I've got a serious limp and I actually move slower now than I did during the last two weeks of using the boot.  Plus, having to use this brand new appendage has been a serious shock to my system.  It's almost as if after having a 13 week vacation of non-use, it's rebelling to the idea of having to return to work again.  My leg muscles are unbearably tight, the ankle is stiff, and the foot is constantly swollen.  Pulling up my pant legs, one can clearly see that my left foot--all the way up to my knee, I might add--is double, and at some points during the day, triple the size of my right foot.

I saw the doctor on Monday for a 14-week checkup.  He took one look at the ham hock and exclaimed, "this looks really good."  I just looked at him dumbfounded . . . he wasn't concerned by the size of it at all?

He just smiled and reassured me that I am progressing perfectly well and that it's just going to take some time for my body to recover from this huge trauma we've caused.  In the meantime, it's the RICE method for me--rest, ice, compression, and elevation . . . can I get some egg rolls, sweet n' sour chicken, and maybe a fortune cookie with that?

Saturday, April 17, 2010

Safety In Numbers

In my efforts to build 'this little blog of mine and let it shine', I've been spending hours seeking out other CMT sufferers online in the hopes that I can use this blog as not only a therapeutic journal to express my inner feelings and thoughts, but also to create an online support community that could recognize the challenges that we CMT patients experience.

A few weeks ago, I stumbled upon Michele's blog and was delighted to discover that she lives right here in the tri-state area and is around my age!  Plus, Michele was planning her own surgery and was about to embark on the exact same path that I was now trekking.  We had the chance to connect on the phone last week and talked to each other for nearly two hours sharing stories back and forth about our own symptoms and challenges.  It was so great to finally find someone with whom I could connect on so many levels and who completely understood where I was coming from, instead of someone just trying his/her best to understand.

Yesterday was her surgery and I took the opportunity to visit her in the hospital this afternoon.  She was struggling with the pain, but after some adjustments, the doctor managed to make her feel more comfortable by the time I arrived.

I showed off my new foot to help give her a visual pep talk and we talked about everythng that is ahead of her in the recovery process.  We had such a great visit and I am so glad that I have made a great new friend.  Good luck Michele!

Wednesday, April 14, 2010

Baby's First Steps

Momentous occasions like these should be documented, right?  After some nudging from the doctor, I attempted to put two feet on the ground today.  And finally success!  No boot, no crutches, no cane, nothing but my own desire to step forward.  My foot is too swollen and rounded to manage a solid step on its own, but I can successfully shuffle around the apartment in flip flops.

My mission this weekend:  find a pair of shoes that I can successfully fit the ham hock into that are visually stunning enough to wear to the office next week!  And, if I can complete my mission, the hope is that come Monday morning, the last 13 weeks will begin to finally fade into the background . . .

Saturday, April 3, 2010

A Little Too Much, A Little Too Early

So, while I started walking in the boot last week, the steps I was taking were small, slow, and few.  Not only was my foot keeping my tempo down, but I also got hit with a horrible sinus infection after that weekend trip to Cali . . . so, I spent most of last week lying in bed emptying an entire Kleenex box and catching up on all my favorite ABC dramas on the DVR.

So, after two weeks of lying in bed, you can imagine how dirty (and stinky) my little studio had become.  But, I woke up today feeling full of energy and ready to take on the day!  I immediately got up, laced on my walking boot, and got to work.  I just kept thinking to myself, "I feel so good.  I can finally get down on my knees to scrub the bathtub . . . I can stand long enough to wash all of this week's dishes . . . I can finally get caught up on my laundry . . . I finally have enough strength in my legs to clean and get rid of that geriatric commode over the toilet and to sit down properly on the white porcelain again . . ." (um, yeah sorry if that was TMI; I could write an entire post just about all the medical equipment I now own since this surgery and how I need a second bedroom just to store all of it.)

But, by the time I was hanging my delicates up to dry at about 4 this afternoon, it had hit me--the aching and swelling.  Not only had my left ankle grown to the size of a grapefruit inside the boot, but my right foot was aching too.  Damn that CMT!  The high arches I have make long periods of walking and standing nearly impossible.  I've had to teach myself over the last year that while I may have the fortitude to get my long list of chores done, my feet usually can't keep up with my mind.  If I try to fill a Saturday with "putting" around the house, I usually find that I can only do about half of what I'd like to achieve.  If I'd like to get it all done, I really have to try to complete small jobs each day throughout the week instead of trying to do it all on the weekend. . . I guess I just forgot what I already knew for a short time today. . .  that's life with CMT now, learning again and again how to change my thinking and to listen to my body.

So, I spent dinnertime ordering take out, sitting on the couch, and icing my feet!

Saturday, March 27, 2010

Get Moving Already!

Well, I made it to LAX safely for the wedding.  In fact, that weekend trip turned out to probably be the easiest travel experience I've ever had!  Wheelchair service was fantastic. . . I just sat in my mobile chair while everyone wheeled me to where I needed to go and picked up my luggage for me.  The car rental agency even provided me concierge service by pulling the car up to the curb for me. . . it was fantastic!  I managed to get along fairly well with the crutches throughout the weekend; I just watched my foot become the size of a football during the entire process!

But, back here in The City, I visited my doctor this week to have him examine my foot just one more time to make sure that nothing was wrong (despite all my suspicions).  By Thursday, the swelling had nearly disappeared completely for the first time and I woke up thinking to myself, "is this what my new foot will actually look like?  Hmm, it's not so bad . . ."

So, in Dr. Weinfeld's office later that afternoon, he took one look at it and said, "everything is fine.  You need to stop thinking about the pain and start walking. . . take some drugs if you need help getting through it, but you should be walking."  Well, if I couldn't count on Dr. Weinfeld for giving it to me straight, then I don't know who I could count on, really.

So, my physical therapist got me up on my own two feet (well, my own foot and this new, unrecognizable foot; yes, I have two entirely different feet now, but that's another post all on its own) with the help of that sexy medical cane and the boot this week.  I made a few laps up and down the hall without (too much) pain.  The last few days have been a different story, however. . . while the foot has finally stopped blowing up like a blowfish everyday, the pain persists.  I just have to keep telling myself I can do this . . . I can do this . . . I can do this . . . give me the damn Advil, will ya?

One more thing--the doc wants me in tennis shoes by the time I see him again in four weeks . . . he does realize I have to go buy new shoes because I am no longer the same shoe size, right?  I have to buy new shoes . . . yeah, but they won't be pretty ones?! (sniff, sniff . . .)

Wednesday, March 17, 2010

A Step Backward

I had just finished up the required two weeks of crutches and was ready to take my first steps on Monday.  I had fully prepared for the day by getting myself a new pair of supportive tennis shoes and a 4-pronged medical cane that was far too sexy for my personal sense of style.  I laced up a shoe on my right foot and velcroed the boot onto my left foot Monday morning and took a few steps across the floor and out my front door: I was ready!  The first few steps were a little painful, but I managed to shift some of the weight to the cane and to get to work in one piece.

But, after continuing to experience shooting pains in my left heel with every single step, I finally tried to call the doctor Monday afternoon.  Unfortunately, he was out of the office and I couldn't get the answers I needed.

I tried to avoid any unncessary steps for the rest of the day and all day Tuesday.  But, by Wednesday the pain had gotten bad enough that I was screaming every time I took a step.  The doctor finally called me back on Wednesday to tell me that "it's perfectly normal to feel pain in the heel" when first walking.  I replied, "I need you to define normal for me, because this is really unbearable."

Now, don't get me wrong. . . I am not someone that is unfamiliar with pain.  In my past life, I've walked on a broken foot for ten days, driven myself to the emergency room to get stitches, and managed to continue dance classes for a week after getting a herneated disc in my back.  So, one could say that I have a pretty high tolerance for pain.  But, there was no way that I could tolerate this pain . . .

So, the doc recommended that I go back to the crutches. . .  and, I reluctantly have.  But, I cried the entire drive home tonight.  I am supposed to fly to CA this weekend for my best girlfriend's wedding and I just don't know how I am going to manage with the crutches and my luggage.  My mom tried to convince me not to go, but I just can't let my friends (or myself) down.  I've been looking forward to this trip since the surgery date and I wasn't prepared to give it all up at this little setback.

So, this time tomorrow night, I will be landing in LAX with a swollen foot, a cumbersome boot, a pair of unlucky crutches, and a heavy suitcase.  God (and the Delta Airlines staff) help me . . .

Bring The Luck of the Irish With Ya!

Celebrate St. Patrick's Day by helping the kids (and adults) suffering from Muscular Dystrophy!  Pick up some green (or gold) today by purchasing an MDA shamrock.  Try Lowe's, Walgreens, Applebees, KFC, 7-Eleven, and many more retailers!  For only $1, you can help find a cure for neuro-muscular diseases just like mine and others!

Or, to add to the pot o' gold with a larger donation of $5, text "IRISH" to 20222 and receive a shamrock wallpaper for your mobile phone . . . please help me and so many others to walk normally someday!

Friday, March 5, 2010

Yo! What About Me? Fuggetabout It!

Usually, when tourists are stopping me in Times Square to ask for directions or when I successfully manage to order "the usual" with full authority at the local pizzeria, I'm filled with a small sense of pride and ownership--I really think I am becoming a "true New Yorker".  Then, there are moments like today that make me wonder, "tell me again, why the hell do I live here?"

So, as you can imagine, public transportation in this city can be a bit of a challenge to those of us who are for lack of a better term--immobile.  My doctor has expressly forbidden me from using the subway since the stairways can be dangerous and very few stations have handicap-accessible elevators; plus, I can't put enough weight on my foot to climb the high steps of our city buses.  Taxicabs are far too expensive, so the only option I have been left with is using Access-a-Ride, the city's paratransit services that provide door to door shuttle service for the disabled.  Now, you would think that because this service was specifically created for transporting the elderly, mentally disabled, and physically challenged that the staff and drivers would be especially helpful to those that of us that truly need it, right?  Yeah, no . . . they're anything but.

I had an 8am pick up scheduled this morning . . . and, when I exited the building and came to the curbside, the driver had already arrived.  She saw me (in all my crutches-bound glory) and moved up further to bring herself closer to the curb.  She successfully pulled up, but just when she tried to back up again to come closer to me, she backed right into the street sweeper that was trying to clean the gutter directly behind her.  Both vehicles became entangled and neither one could move.

So, just like in a classic New York moment, both drivers jumped out of their vehicles and started yelling at each other, calling each other all sorts of names and throwing around that authoritative "stupid" . . . I just stood there with both of my crutches watching the whole scene!  They had completely forgotten me and had pretty much left me to my own devices.  Within about 5 minutes, I had drawn a small crowd including my building super and a few of the truck drivers from the plumbing business down the street.  They all came to my side, trying their best to get my driver's attention in their thick Noo Yawk accents, but to no avail.  I was just left stranded on the sidewalk yelling, "Hello, what about me?  Hello?  HELLO?! What about me?  How am I supposed to get to work?  Hell-o-o-o!  What about the cripple?"

After about 10 minutes, I had finally had it and resorted myself to hailing a cab and leaving those two yelling at each other in front of my apartment. . .

Thursday, March 4, 2010

Let's Get Physical!

Today was the first day of physical therapy and I had been dreading it all week!  Now, don't get me wrong, I have always been the "A+" student who follows direction and does her homework exactly as instructed.  After all, I miss my independence tremendously and want more than anything to gain it back as quickly as possible; and, I'm (usually) willing to do whatever it takes to get it.  In fact, I have been known on previous occasions to push myself a little too hard, amazing the doctors and forcing them to beg me to slow down.  When I was recuperating from a knee surgery in high school, I had been told I would be immobile for 6 weeks . . . yeah, I made sure I was walking in 4 (and, if I remember correctly, I think I was skipping and jumping in 5)!

So, I wasn't afraid of the work necessary to gain mobility.  No, I was afraid of the pain.  Actually, I was afraid  that after all the pain I would have to endure, I would still not be able to gain measurable use of my foot and ankle.  (Wow, I think that's the first time I've been able to actually put into words what I have been feeling all along.)  I think that the diagnosis of CMT (and all the symptoms that go along with it) has brought my fear and anxiety to an all new level.  I believe that if this surgery had been one that had been performed to simply correct an injury and nothing else, I would feel much more confident in my recovery.  But, just like everything else in my life--like my relationship with my father, my addiction to ice cream, and my overwhelming sense of independence combined with a desperate need to be loved by a man--my feelings are complex.

Anyway, I met with the physical therapist today (despite a few obstacles like first having to find a new, unknown therapist because my regular therapist who I adore and have been seeing for over a year is not covered under my new insurance; and then second, failing to hail a cab for nearly 30 minutes and making me extremely late for my scheduled appointment) and her eyes nearly popped out of her head when she saw this severely swollen "ham hock" excuse for a left foot.  We did a few muscle flex exercises and some massage to reduce the swelling, but overall, you could safely say that I have nothing but dead weight hanging off my left leg.

The pain was minimal and I am confident that my next visit will be easier.  But, all I can think about (and what I confessed to the therapist out loud) is:  am I going to have cankles when this is all said and done?

Monday, March 1, 2010

At The End of My Rope

I can't even begin to put into words the disappointment I felt today. . . I went to the doctor today fully expecting to have my cast removed with the intention of finally ditching the crutches, putting two feet on the ground, and walking [semi-]independently with a boot.

The last week has been more than trying on my patience . . . with all the snow we've been experiencing during this month, I've been spending way too much time trapped in my little apartment forced to watch an exhorbitant amount of bad reality TV, order more than the FDA recommended greasy take-out Chinese, and play nauseating online games. . . After 7 weeks of non-activity, I truly had had it!  Like a pregnant woman entering her last month of gestation, I was willing to do whatever it took to end this whole experience.

We removed the cast, but the doctor informed me today that he would like me to continue using the crutches for two more weeks before putting full weight on the foot . . . he finished it with a "and don't put any weight on that foot without the boot under any circumstances!"

I cried non-stop for twenty minutes as soon as I got home (and without an accurate tally system in place, I think this was my third temper tantrum this week).  I want my mobility and independence more than anything--I want to be able to walk to the grocery store, to go see a movie, or to just be able to join my colleagues for after work drinks--but, I guess it's just not a possibility yet.

The only (and extremely small, in my opinion,) win of the day was being able to finally wash/exfoliate. . . when I called my mom in tears to let out all the frustration, she said, "well, it sounds like you managed to get in the bathtub at least."  All I could do was cry back, "yeah, but I don't know how I'm going to get out?!"

Sunday, February 28, 2010

How Fortunate I Am

While having to remain in the great indoors during this unrelenting Blizzard, I happened across the story of Ty Swensen from St. Anthony, ID.  Ty is a sufferer of CMT and was recently forced to have both of his legs amputated due to a previous bone injury that left his foot seriously infected.  I was deeply touched by the ordeal that Ty has experienced . . . I can't help but think how fortunate I am; I immediately made a donation to the family fundraiser that was recently held at their church community to help pay for his rehabilitation.

Friday, February 26, 2010

White Drifted History In The Making . . .

It's snowing . . . it's been snowing for more than 24 hours already. . . it's going to continue snowing for 18 more hours . . . and, coupled with the other two storms we've already had in the last few weeks, it's the most snow NYC has ever seen in a single month! And, with a cast still on my foot, I think this may be the longest I have had to remain locked up in my apartment since I've lived here!

Let me out! Let me out! Let me out!

Tuesday, February 23, 2010

I Feel Pretty, Oh So Pretty . . .

Today marked the 6 week post-op mark and I am feeling divine (well, considering the current circumstances)! My body continues to heal nicely and I am anxiously awaiting this final week before we remove the cast and I can take my first steps . . . everyone (including me) has been so consumed with the progress on my foot/ankle that I've neglected to report on the other half of my surgery--the thyroidectomy.

Well, it's gorgeous people! Gorgeously perfect! The incision is approximately 2 inches and Dr. Genden (I like to call him Michaelangelo) cut it directly along the natural crease of my neck to make it eventually fade into oblivion. It has felt a little tender to the touch over the last few weeks as it heals internally, but overall, the thyroidectomy has been an extremely easy and gentle healing process with little to no discomfort. In fact, I haven't felt better in months with more energy and the absence of that awful "swollen gland" feeling . . .

Friday, February 5, 2010

Details, Schmetails

I've been finding it a bit of a challenge explaining to ordinary folks what it means to live with CMT Syndrome, why I had to have such an extensive surgery on my foot, and what this virtually unknown disease is doing to my body. . . So, I was doing a little online research today and found this article about CMT Syndrome. I've known all along that what my surgeon has been telling me is the right thing to do for maximum longevity, but it was really enlightening to read an article (complete with images) that demonstrates how and why he did it. . .

We all know that I have insanely high arches, but what the surgeon explained to me is that my heel was also beginning to turn inward (just like the photo demonstrates). He turned it back out and anchored it with a bolt.

Also, we knew the peroneal ligament had completely torn and needed to be repaired, but none of the doctors I saw before the surgeon could explain why . . . the article totally explains how the ligament finally wore down and why. . .

In total, this is the list of what we did to my foot (you can click on the links in the article to get more details):

* Release of the tight plantar fascia
* Lengthening of the Achilles Tendon
* Repositioning the 1st metatarsal bone (dorsiflexing 1st metatarsal osteotomy)
* Cutting the heel bone and shifting it out (Lateralizing calcaneal osteotomy)
* Peroneal tendon debridement or repair

Very interesting! I feel so much calmer knowing that I made the right decision to have the surgery! And, soon enough, it will be on to the right foot in the hopes of a better life! ;)

Monday, February 1, 2010

Hi Ho, Hi Ho . . .

it's back to work, I go! After a very quick three weeks recuperating at home, I made it back to work "all by myself!" today (seriously, where's my piece of candy or Atta Boy?!). Luckily, the insurance company approved a "scooter" for me to use to get around in replacement of crutches.

It doesn't have the luxury of power steering, it doesn't stop on a dime, and it doesn't have any measurable horsepower; but, I can get a good downhill speed if the conditions are right! Nonetheless, it's a lot easier on my body and much more steady than crutches any day . . . I can actually reach my office on the 42nd floor without getting out of breath (too much).

I can only sit comfortably in my office for about 6 hours before my foot begins to throb, but it's rewarding to be part of the outside world again!

Wednesday, January 27, 2010

It's A Family Affair

CMT Syndrome is a genetic condition with varying presentations, but with most patients inheriting the disease from one of their parents who also demonstrates evidence of the disease.  Because the disease is generally passed along through a dominant gene, there is a 50/50 chance of carrying the disease onto the next generation.

I am the first (and currently remain the only) person in my family to be diagnosed, but I have many symptoms that both my father and younger brother also exhibit.  One of the tell-tale signs of CMT is a cavus foot (abnormally high-arched foot).  When one of my many doctors was examining my feet last year and had initially suggested that I may have the condition, he asked if anyone in my family also had high arches.  I immediately replied that "yes, I have exactly the same feet that my dad does."

Another of my doctors, upon investigating the cause of the injury to my peroneal ligament asked me if anyone else in my family had had similar soft tissue injuries in their ankle.  I replied, "yes, my younger brother has already had two surgeries on the same ankle to repair two different tears. . . do you think he was pre-disposed to this type of injury?"

Since this journey of discovery in my own diagnosis, I have now encouraged both my father and brother to get tested for CMT Syndrome.  But, while waiting to visit a neurologist, my brother called me last week to tell me about some recently developed health issues he is otherwise experiencing.  His family doctor had encouraged him to take part in a sleep study to help identify some problems with his sleep patterns and to find the cause of his increased bouts of fatigue.  He said that after completing the study, his doctor had diagnosed him with a series of problems, including restless leg syndrome and sleep apnea.  I didn't think much about it at the time, but I finally called him back a few days later after a very nagging feeling . . . I told him that I didn't think he had restless leg syndrome, but that instead he has CMT and the doctor had mis-diagnosed him.  I told him once again that he needs to make visiting the neurologist a priority and he needs to be tested immediately.

Additional symptoms of CMT include weakened ankles, feelings of numbness and tingling, increased fatigue, repeated tripping/falling, shortened calf muscles, underdeveloped achilles tendon, and plantar fascitis.  All of these conditions are very closely associated with many other common diseases as well, making it easy for doctors to misdiagnose patients and the opportunity for treatment delayed.

While my father has the tell-tale high arches, he hasn't experienced many of the more common symptoms of CMT that I have. . . The research that I've been able to find since my diagnosis indicates that the disease becomes more prominent in each succeeding generation.  It's more important now than ever that my brother get tested in the hopes of preventing passing this incurable condition on to his children . . .

Tuesday, January 19, 2010

They Say Time Heals All Wounds

January 12th had to be one of the longest days of my lives . . . literally. Stacey and I arrived at the hospital at NOON, well ahead of my scheduled surgeries at 3pm. I was required to fast from any food or drink before midnight the evening before . . . I swallowed my last spoonful of ice cream at about 10:50pm. And, as soon as we found our way to the surgery check-in and family waiting room, the pleasant aroma of beef and spices was wafting its way toward us--the cafeteria was directly below us. It was pure torture for those of that had had a twisted, tumbling stomach all day. . .

After checking in, Stacey was able to stay with me until about 2:30pm when they took me to the surgery holding room where they got me a warm bed and introduced me to the anesthesiologist and nurses. I remained there until they managed to locate Dr. Genden about 45 minutes later (he had disappeared for a short stint, apparently . . .). After giving me some initial gas to relax me, they wheeled me into the operating room where I professed my unbearable hunger and apparently ordered a cheeseburger and fries from the lead resident before finally releasing myself to the full power of the anesthesia.

I didn't wake again until almost 9pm when I could hear Stacey and the nurses yelling at me in the recovery room. . . they only let Stacey stay with me for about 5 minutes before shooing her to go home. Stacey left just in time . . . the "vomiting cycle" of anesthesia recovery began just minutes after her departure. They finally wheeled me to my room after 10pm . . . I kept crying for food as my stomach was doing somersaults by this point. They finally found me some saltines and jello, which took me only seconds to devour before falling back to sleep.

I tried my best to sleep, but was distracted with nurses waking me hourly to take my stats or to draw blood and a wailing roommate with a broken hip. . . my throat was sore and dry, but luckily they had given me a nerve block to numb my leg completely. The suffering was all worth it though; the surgeries were completely successful and the hospital stay was nearly pain free . . .