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!