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!

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 . . .

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?

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?!"

It's Official--The Date is Set

January 12th . . . the day I will get my new foot and ankle. Dr. Weinfeld informed me Monday, while pointing to my x-rays on the wall, that we will NOT have to fuse my ankle (how fortunate for me), but that I will soon be a red flag for the Homeland Security Watch List and a constant nuisance to the TSA once he inserts 4 different bolts and a variety of titanium anchors in my left foot. When I asked if my left foot would now be a completely different size than my right foot, he replied, "well, your foot will definitely be a different shape than the right one, but we can't tell right now if your foot will be an entire size larger . . ."

Great! I love it when the answers are so clear . . . I guess I will just have to put off purchasing any new shoes until Spring.

In the meantime, preparations continue. I decided last week during Open Enrollment to change over my health insurance from United Healthcare to Aetna on January 1; the coverage will be much better and likely leave my out-of-pocket expenses for the surgery at zilch. Luckily, I made the right decision . . . when speaking to the surgical nurse yesterday, she happened to mention to me that Dr. Weinfeld has decided to no longer accept United Healthcare insurance next year! Just a small, minute, completely insignificant detail he failed to tell me!

Deep inside, I am still sorting through all my thoughts and feelings related to the diagnosis, this surgery, and my overall health this year. At lunch with a colleague today, she confided in me that she requested a promotion and was sharply denied one. . . the conversation then shifted to both of us discussing our personal goals and how our careers have evolved over the years. It was the first time I had been able to verbalize how important it is for me to focus on my health this coming year and to just maintain my current position. As the words came out of my mouth, I was sharply surprised at my own present lack of desire to prove myself. . . I am perfectly happy with the status quo and have no expectation to be promoted any time soon. I think that I just have to focus on remembering to take my vitamins and supplements, enjoy the upcoming holidays, work hard to get through physical rehabilitation, and try to look forward to a rewarding vacation next summer.

On another note, according to my rough estimate, I figure that following this surgery, I will have spent approximately 20% of my life on crutches . . . will it ever end?

CA Dreamin'

After a brief business trip south of the border, I headed to CA for a long weekend to visit the fam and to see my nieces and nephews in action.  After a fun-filled weekend, my oldest brother took me to see his orthopaedic surgeon on Monday morning to get a second opinion regarding my ankle. After about 45 minutes of an onslaught of questions and a close examination of my MRI, Dr. Legome said very simply, "you have a lot of problems my dear, and I am sure you already know that." He continued by confirming everything I've been told, including the diagnosis of CMT and telling me that not only should I have the surgery, but that the quality of my life entirely depends on it. He then spent the next 15 minutes lecturing me on losing weight . . . as if I didn't already know that was an issue!

I completely lost it then and there; I finally let all the fear, anxiety, and anger release from inside. . . I think I was still hanging onto a small sliver of hope or a medical miracle when Dr. Legome validated everything that I have been wanting to avoid. And, now that the right foot is hurting also, we asked if I should take the plunge and have both feet operated on at the same time. He thinks it would be far too traumatic for my body, so I have to make plans for how to address that foot sometime in the future. Thank goodness I had my big brother there to put his arm around me; I don't think I could have handled another doctor's appointment by myself.

I managed to board the plane Monday night with dry eyes. . . I joked to myself that I think I am finally moving past denial and straight into anger! I'm progressing . . . definitely progressing! That's good, right?

Baby Steps, Baby Steps

After writing a teary-eyed post Monday night, hitting re-dial with what seemed like a bazillion times, and an ever-growing panic attack at the thought that my world as I knew it was falling apart, I finally reached Mom on the damn phone sometime late Tuesday afternoon to finally get that all-knowing "motherly advice" I desperately needed. We talked about my options for scheduling surgery, discussed how this diagnosis is now going to change my lifestyle, and tried to speculate why it has taken 32 years to finally get the answers to all the questions we have been asking since the day I took my first steps. (Yes, apparently there have been clues that a trained physician could have deciphered at any point before now . . . whodathunkit?)

We both agreed that I will probably have a much more enjoyable holiday season without a full cast, crutches, ice packs, and narcotics (although they might be more cheery with drugs and alcohol, I am sure). I also recognized that I was becoming increasingly overwhelmed at the idea of leaving the office and all my open projects in just three weeks (with one of those including a foreign business trip). Additionally, by delaying the surgery, I can afford some time finding another doctor to offer a second opinion.

After a few days of thoughtful consideration and a long talk with my boss, I've decided to schedule the surgery in January 2010. I figure I am already in constant pain, but the pain I will feel post-surgery will be much worse; and, I really want to be able to sit on the floor opening gifts under the tree on Christmas morning with my nieces and nephews. Plus, after having to endure my birthday with a broken foot three years ago, I would really like to spare myself a repeat of that agony.

So, here is my plea: Is there anyone who would like to volunteer to come spend a week in the Big Apple in January? You won't get to see much of the city since you'll be feeding me, doing my laundry and generally being my bed-nurse . . . but if you'd be kind enough to come help me with my recovery, I will promise to take long, drug enduced naps each and every afternoon, giving you the opportunity to take in a Broadway show, tour the MOMA, take photos from the top of the Empire State Building or to see any other sites that you've never had the chance to discover.

Sure, it'll be winter, but not to worry; we don't really get much snow and there are plenty of indoor activities to enjoy! Besides, for those of you that are unemployed (or have an open calendar), when else are you going to have the opportunity to pick up and jet to the NYC? Volunteers welcome!

Crippling News

After nearly a full year of walking in pain along the streets of New York City; countless doctor's appointments; several MRIs, x-rays, and neurological tests trying to find the source of my pain, I finally met with a surgeon who today told me that he needs to completely "rebuild" my left foot and ankle.

I was prepared for the news that surgery was inevitable, but I was not ready to hear the extensive details of how he will have to break my foot, cut my achille's tendon, and re-anchor the tendons and ligaments on the exterior of my ankle. Getting the play-by-play, I nearly "lost it" in his office and I am definitely losing it now as I write this post.

I'm a cripple (for lack of a better term, really). Many of you have at least one, if not many, memories--I am sure--of me falling, tripping, or tumbling down stairs, slippery floors, or incredibly something as simple as my own two feet (yes, it's possible and I do it a lot, folks). And, after years of broken bones, sprains, and more, Dr. Weinfeld has finally confirmed what a few of New York's finest physician's have suspected for the last year--I am genetically pre-disposed to being "accident-prone." It seems funny, but only because I am making my best attempt at finding this diagnosis humorous right now . . .

Charcot-Marie-Tooth Syndrome is a hereditary neurological disorder that causes shortened calf muscles, extremely high arched feet, and weak ankles. The root of all these side effects is a syndrome that will slowly over the course of my life kill the nerve endings in my hands and feet, which will eventually atrophy all the muscles in my extremities. Much like muscular dystrophy, I will progressively lose most muscle strength in my feet and/or hands over my lifetime. . . The surgery that Dr. Weinfeld wants to perform will likely be the first of many that I will have to endure for years to come in order to maintain full use of my feet.

I am incredibly terrified, but at the same time calmed that I have found a surgeon that is so well-versed in this condition and is confident that I am going to recover well from the surgery. But, I can't help thinking what does this diagnosis mean for me and the rest of my life? What does this mean for the opportunity to have children some day? (I can't help thinking now that it's probably a blessing in disguise that I never married and had children in my 20s . . . )

Now, what to do? When to schedule my surgery? Should I do it now in the hopes that I will be in a walking boot in time to travel for the holidays? Or, do I wait until January when the officework is a little slower, but snow is on the ground and I am stumbling with crutches to get into a cab every morning to get to work ? How will I take care of myself in my little studio apartment; in this big city without a car? I really am losing it . . .