Christmas Eve 2008

First off, I have to say it: I honestly never expected such wonderful responses to my last posting. Thank you so much to everyone out there for "listening" to me air out some of the frustrations that have been building in my lately. It feels so good to be a little more raw every so often, and I'm so so grateful for you guys!

On another note, home in Denver for the holidays and totally forgot about that little b*tch called altitude. I was without O2 for the first couple of days/nights here b/c I flew in on a weekend and we couldn't get things set up until Monday. I knew my sats were in the upper 80s or so but I figured it would have to be okay for a day or so. Bad idea number one, for sure. By the time I got the stuff on Monday I was dipping into the high 70s every so often, which was definitely scary for me. So, needless to say, since getting the O2 I've been living on the stuff. I also developed a pretty nasty fever and had to see the my old pediatric doctor today, but the good news on that front is that so far he thinks it's pretty much viral. We started a prednisone burst and Cipro just to keep things at bay until I can get back to NYC and make a plan with my doc now. It's great to have such great medical teams in both cities, but kinda sucks that I needed to waste a couple of my days home feeling miserable from fevers and low O2.

The point of all of this isn't just to warn any Denver-bound cystics to remember their O2 (although that is really good advice, btw), but to point out this: it's Christmas Eve, I just ate my first real meal in two days (fueled in part by the prednisone, no doubt), and I am right now sitting with my mother, father, sister, grandmother, godmother, my puppy, and my parents' two beautiful dogs downstairs in their cozy family room, sipping cocoa and enjoying carmel corn as we all watch "Out of Africa." The table upstairs is set, and my awesome sister was sweet enough to go to the mall for me this afternoon with my list and credit card, so my last minute gifts are under the tree. I even felt well enough this evening to help peel the potatoes and carrots for tomorrow's Christmas dinner and to have a glass of champagne with the family. Tonight we will all trundle down in my parents' house (which luckily has bedrooms and bathrooms to spare) and tomorrow, although I will still have this nasty rotten disease, I will also have some very supportive family, a selection of helpful drugs, and a liberating 50 feet of tubing on my O2 concentrator to help me through it. Thank you God, thank you Life, thank you Universe.

What occured to me this year is the fact that as I get sicker, these kinds of days, nights, and moments mean a lot more to me. I sat tonight, surrounded by family and loved ones, and for one moment I thought: well, if this night is what I have left, then this is what I will savor, this is what I will take with me wherever I end up, and, most importantly, this night is what I will leave behind. And all the fevers and the oxygen and whatever other little dirty tricks CF has up its sleeve won't change tonight. Merry Christmas everyone.