Thursday, September 24, 2009

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!

Monday, September 21, 2009

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 . . .