New Year, New Me?

Happy 2016! I made it through the holidays and another infusion. Honestly, there’s not much to tell. But…I’m finally back to work downtown!

I had a rough couple of months at the end of last year, and my employer was very supportive in allowing me to work from home while I recovered. Early on during my relapse, I had a difficult time walking because of the nerve pain in my back and left leg. Stairs? No thanks. Exercise? Don’t make me laugh.

As I continue to reflect on the “fourth quarter” of 2015, I think about how frustrated I was when I first diagnosed.

THE WEDDING

I was diagnosed on 9/11, which is already a date I’ll forever remember for obvious reasons. Anyway, it was a week before I was to attend the wedding of my good friends Amy and Tom. I was a couple weeks into the relapse, and with each new symptom came a world of hurt. But I didn’t want to disclose my diagnosis because I didn’t want anyone to focus on me when all eyes should have been on Amy and Tom.

By the time their wedding day game, all I wanted to do was stay in bed. But I couldn’t miss their special day. I walked into the gorgeous St. Mary of Perpetual Help in the Bridgeport neighborhood of Chicago, walked around and got lost in the beautiful architecture. Eventually, when I had to find a seat, I thought, “Crap! I have to kneel.”

Kneeling in a pew can be a struggle, but it’s easy to hide you have a balance problem when you have the bench behind you and the arm of the pew (since I was on the end) to the side. But this was an old church that required you to kneel to accept Communion. Kneel in the front of the church, in front of everyone. I was nervous about losing my balance, but I made it through mass without a stumble. Big win.

Next up was the reception. Cocktail hour was brutal for me. I was in a lot of pain, the last thing I wanted was a cocktail, and all I could think about was hopping into bed. Once the room opened for dinner, I raced (as fast I could anyway) to my seat.

I’ll spare you the details, but I ended up leaving the wedding as soon as the dance floor opened because I could barely walk, let alone dance, without pain. I tried to sneak out so no one would notice, but I was later told that most people did notice. And they figured I left because Randy (my boyfriend) and I had an early flight to New York the next morning. We did have a flight to catch, but had I been feeling my normal self I would have stayed up all night to be at that wedding. It still kills me that I couldn’t enjoy that night the way I wanted to. My friends are so much fun, and I was a huge downer that day.

NEW YORK

New York is one of my favorite places to visit. Going to college there for short time more than a decade ago as part of a special program, I fell in love with the city and continue to visit often.

Randy and I planned to go to a Mets/Yankees game at Citi Field, so we didn’t want to cancel the trip and lose out on the money we paid for the tickets. We also wanted to eat at our favorite restaurant in Chinatown, shop at my favorite stores near NYU, visit the 9/11 memorial and more. Of course, the trip didn’t go as planned.

Getting up and down the subway stairs proved extremely difficult for me. We made it to a few stops, thanks to Randy practically holding me up as we slowly walked up and down stairs. Of course, most of our stops were not handicapped accessible and therefore lacked elevators.

We did make it to the baseball game to see Matt Harvey pitch against CC Sabathia. But we left well before the game ended because I needed to take my sweet time getting out of the stadium, to the train, up the stairs and on the subway car. We didn’t get to the 9/11 memorial. We didn’t get to go shopping at my favorite shops near NYU. We didn’t get to do more than half of the stuff we wanted to do. But we were together and that’s all that mattered. Plus, we have a plan to go back when I’m feeling better…and I hope that’s sooner rather than later!