Sunday, November 29, 2009

Not Your Average (Post) Thanksgiving Challenge

Like most Americans, my family and I spent the better part of last week resting, playing, eating (yes, I did in fact gain 5 lbs in 4 days, and yes, I am happy about it, thank you very much!), and most of all being thankful. We were thankful to be together, thankful for the good food and good company or our wonderful friends, thankful for the (relatively) mild weather in New York, and thankful for an uneventful weekend CF-wise. I was especially grateful to be off IVs and in good enough health to celebrate both Thanksgiving and my birthday in style, and for the chance to do amazing things like go to a Broadway play and see my sister's clothing line on the mannequins at Bergdorf Goodman! To say it was a very thankful Thanksgiving would be a huge understatement.

It's always very cool to do things like go around the table and count our blessings, or see people on the street enjoying themselves and being grateful for all that they have, or (and maybe this is just me) reading all your awesome CF friends' blogs about the many reasons they give thanks during this all-important holiday of celebrating what's right with our lives despite chronic illness or whatever other demons we might be facing. In fact, for me that was one of the many great parts of this year's holiday . . . just reading what all you guys had to say on the subject. Not to say that CFers have a monopoly on being grateful, obviously, but it's clear from the posts that we have more than our share of the stock. Yet another reason to be proud.

Which kind of brings me to my next point, and the start of another official Matter of Life and Breath Blogger Challenge. We all know you guys are grateful, and awesome at counting your blessings, making the most out of life, and eeking every little last drop of pure fabulousness out of each day and each breath. We know that, and we love you for it. Kudos to you all, and a big round of well-deserved applause for the "a rainstorm-makes-your-clothes-clean" positive approach to life.

So here's the challenge: let's see how good you guys are at turning it around and sharing what you're most thankful for about yourselves. Yeah, that's right, I'm asking you all to toot your own horns in a major way, by counting down at least 10 things that are downright awesome and fabulous and amazing about you. Not your life, not your wonderful family, not your fantastic doctors and the wonderful drugs that help you breathe, but just. plain. you.

In case anyone's wondering the inspiration behind this all, check out the recent post on Ronnie's blog about a young woman with CF asking how she could form an identity beyond her disease (title: "How Can I Simply be Abby?"). It really got me thinking about illness and identity, and also (by extension) about the "grateful patient" expectation. You know what I mean -- sometimes as chronic patients with a serious disease (or as caregivers, parents, and partners of patients) we're expected to be, well, grateful. Grateful to the other people in our lives for helping us, grateful to our doctors and surgeons, grateful to the volunteers who help fundraise, grateful to the sun for rising yet another day. And we are grateful -- incredibly and rightly so -- as we all do an amazing job of showing pretty much everyday. But there's a time and a place to be grateful for yourself and all the really cool things you're proud of as well, CF-related or not, and I think it's time we let out a collective roar about just how damn wonderful we really are.

Okay, official "rules" time: 1) you can post in the comments or on your own blog, but please post here and let us know your blog address so we can all share in your awesomeness; 2) anyone is welcome, regardless of your connection (or lack thereof) to CF or any other illness -- coolness may be a shared trait among cystics, but it's certainly not exclusive to us; 3) you have to post at least 10 things you're proud of or think are fabulous about yourself -- and I don't care if it's that you have really cool freckles on your nose, I still want no less than 10; 4) no giving credit to anyone else for your awesomeness -- okay, so we all know that you're not directly responsible for your really cool and unique name (ahem!), but you rock it like a superstar, right? Keep it about all about you, baby; and finally, 5) you don't have to link back to this post, but please challenge your readers to follow suit with their own lists. I know there's more to the blog world than just the people who read mine (although I maintain that my readers are the coolest group out there!), so let's keep the ball rolling as much as possible. Let's face it: after this whole Thanksgiving thing, we all could use a little time to just be grateful for ourselves!

I promise I'll make my own list and post it right here for all to see. In the meantime, happy post-Thanksgiving self love fest!

Live. Love. Create.

After treatments, after exercise, after family and after turkey . . .

. . . you have to take a little time for yourself.

**Note: "Cats" image originally sketched by Andy Warhol, arrangement/colors are my own. "Lotus Blossom" inspired by Turkish folk-art. "Dinner Party" image taken from 1920s cover of "The New Yorker."

Friday, November 27, 2009

They Say It's Your Birthday

It's my birthday too!

Wow, so okay 28 years. 27 years and 46 weeks after I was diagnosed and a full 10 years longer than the projected life expectancy for CFers at that time. 17 years after I got my first horse for Christmas, 15 years after the first time someone I had a crush on kissed me (eep!), and 12 years after I first got my driver's license and started tearing up the streets of Colorado. 10 years after my senior prom and the year I left home to move across the country, and 7 years after my 21st birthday, which we won't even begin to discuss here (although I can't resist noting that it spanned two major US cities). 6 years since I graduated and left Atlanta for "The Big Apple" and 3 years since I graduated again and left law school for "The Real World." Nearly two years since I first heard the word "transplant" applied to my lungs and 1 year and 1 month since Sampson joined my family. In other words, 28 years full of crazy, chaotic, amazing, memorable, and sometimes just a little bit over-the-top experiences. And the only thing I have to say to all that is what I've already said: wow.

Birthdays are always amazing things, and while I don't mean to steal anyone else's thunder, I think they're even more special when you live with a chronic illness. It's such a cool tradition to celebrate life and the day that we came into this world, and of course this year I feel like it's even more significant somehow. The truth is, though, that it's not just the 27th of November that's worth celebrating -- all those plain old regular days that make up the rest of life are pretty damn amazing too, when you stop to think about it.

Hopefully at some point during this 28th year (most likely on one of those plain days that happens to fall in between the birthdays) I'll get a call for a kind of "rebirthday" that I know will change my life in some new and surprising and hopefully wonderful ways. I'm so grateful for the past, but I'm also really looking forward to the many things I plan to add to that list of "lifetime milestones" with my new lungs. Every day of every year, for hopefully a long time to come.

So happy birthday to my awesome body for sticking with me through all the nonsense, and happy birthday to my mind for not giving up and going wholly crazy through the madness. Most of all happy birthday to my spirit, for proving itself this year to be just about the most resilient thing since the Timex watch ("takes a licking . . . "). I can't wait to push the envelope even further and see what new ways we can come up with to get into trouble together -- and with 365 opportunities a year, I expect some pretty amazing things.

Okay so how many days is it until your birthday, and how are you going to celebrate?

Wednesday, November 25, 2009

And Every Breath We Drew Was Hallelujah

I feel like for the last week or so, ever since getting news that "we're number 1!" (sorry, I just can't resist the urge to make that into a little cheer every time I type it), I've been having these kind of slow-motion moments when I suddenly look around and think "wow, this could be the final time I do ____ with my 'old' CF lungs." I know that sounds kind of weird, but to be totally and completely honest the prospect of removing one of my most vital organs and replacing them with the lungs of another is a pretty weird concept, so bear with me if I get a little sentimental.

Yep, sentimental. Or maybe nostalgic is the word I'm looking for here. Because the thing is, I love my lungs. I don't particularly love the whole CF part, obviously, but I love that these amazing bags of tissue have managed to fight this hard for so long. I love that they're still breathing, still giving me enough rich oxygen to enjoy the holidays and my birthday. And if they need a little help every now and then, well, who can hold that against them really? Because these are the lungs I was born with, the lungs that saw me through so many horse-show summers and ski-weekend winters, the lungs that held their breath in that crucial moment before my first kiss and the lungs that fueled my celebratory cheers when I graduated. These lungs have been my heroes, my sometimes silent companions, and the bane of my existence at various times, but the point is that they're my original lungs, and it's hard for me to fathom sometimes letting them go.

Last night I stopped IVs. I was scheduled to stop this morning, but the peripheral infiltrated and it wasn't worth calling out a homecare nurse and starting another for one dose, so instead I simply called the game and pronounced myself (and my lungs) the winners yet again. A little over three weeks of hardcore antibiotics (our 7th course this year, but who's counting?) and we're back on top of our game -- able to do most resting activities without supplemental O2 and hitting the gym/gyrotonics like nobody's business. So it was time to stop the drugs, and as usual I couldn't have been more thrilled about it all. My mom and I carefully washed our hands with sterile soap, peeled back the tegaderm, and with a quick deep breath, pulled out the peripheral catheter and voila -- my arm was IV free. It's a ritual I've repeated over and over throughout the years, and it never stops feeling pretty darn amazing, as I'm sure you all know.

But as I stared down at my naked wrist, still red and a little raw from the infiltration and the dressing, it suddenly dawned on me that this might very well have been the final "tune-up" for my CF lungs. Kind of a heady realization, when you think about the fact that I've been enduring these pokes and lines and "wow, did I just get hit by a truck?" side effects for no less than 28 years. And yes, of course I realize that I'll be back on IVs off and on after transplant (hopefully more off than on), but the knowledge that these lungs (my lungs) might never again have to endure a course of Merrem or Tobra. Well, it was just kind of a "wow" moment, to put it lightly. Kind of like the other day when I realized after clinic that, unless I come back there earlier than my usual 3-4 weeks or so after IVs, I might also have had my final visit to the CF clinic as I know it. And again, of course I'll be back there occasionally after transplant. I'll still have CF -- I know that -- but my lungs won't have it, my CF doctor will no longer be my primary care pulmonolgist, and therefore it will all be different in some ways, even if parts of it will stay more or less the same.

I guess change always brings with it some sense of loss and nostalgia, even the most positive ones. Graduating law school is a great example -- I was so ready to be out of there, and yet at the same time I couldn't help looking around during those final moments on the Columbia quad and thinking "I may very well never see some of these all-too-familiar faces again." And I realized that, sure, there were parts of law school that I wouldn't miss much at all (Socratic Method, anyone?), but there were also parts that I would be kind of sad to let go. Little things, even, like just the simple routine of having familiar faces in the hallway and knowing how to find my way around the building. All those known, understood, and comfortable daily rituals that, however annoying they seemed at the time, made life just a little more predictable, a little bit safer. And I knew, of course, that I would make new friends and learn my way around new hallways at work. That was never a question, but it was still a change. And it was still a little scary.

I don't preach on this blog because it's not my calling and it's not my style, but I think I've been open enough at this point to say that I do believe in a higher plan. I believe that all of us are made from the same amazing universal light, and guided by a divine hand. Because of this belief, I know that there are perfect lungs out there for me. I feel strongly that they will come at the right time, and that they will be a blessing beyond measure -- a perfect gift from one child of God and the universe to another. But this doesn't mean that I expect my new lungs to replace my current ones. No lungs, no matter how perfect, could ever in my mind replace my CF lungs, because no lungs can go back with me and relive all those wonderful (and maybe even not-so-wonderful) moments of my life thus far. My new lungs and I will have new experiences, no doubt some of them amazing and wonderful and beyond my wildest dreams, but they will be new, framed by a different backdrop, and maybe sometimes slightly confusing. And that's okay, honestly. I've faced change before, and I've come out on the other side stronger and still myself. I fully expect to do it again.

So as I glance once again at my recovering IV site this morning, I'm still awash with feelings of awe and, yes, a little nostalgia for the CF lungs I might soon be giving up. But I also can't silence that other little voice in my head, the one that's been growing stronger and louder lately, and that simply seems to say over and over again: "This is okay. I'm ready. When the time is right, I'll be willing to let go of what's known and embrace the new. I'm ready."

And that is, by far, the biggest change of all.

Tuesday, November 24, 2009

Love Among the Lotus Flowers

5 months ago, I fell in love. I didn't expect it to happen, in fact it was probably the last thing I would have anticipated as I stood in the center of that large, hot, and dusty pottery factory somewhere in Cappadocia, Turkey, watching my mother, father, and sister haggle over some large jugs and decorative bowls. The owner of the factory, a kindly looking older man with an impish smile, seemed all too happy to discuss the various deals he could make, and cup after cup of the region's famous apple tea was brought out as the bargaining continued. Having reached my personal limit for hot beverages served despite the 100+ degree heat, and knowing that I was of little use in figuring out the best price for my mother's new living room decorations, I wandered from the group and made my way over to a smaller, shadier, and (I hoped) cooler room off to the side of the main showroom. At the very least, I figured my exit would allow me to avoid having to "politely decline" any more steaming cups of liquid heat, especially since, when it comes to tea, I was fast learning that the Turks don't really take no for an answer.

I stepped into the dimly lit room and immediately noticed that it was filled, floor to ceiling, with decorative plates hanging on the walls. These plates were in stark contrast to the larger platters displayed out in the main room -- all were vividly painted in rich colors, measuring about 12 inches across, and designed using a concentric circle motif. Intrigued (and relieved by the blessedly cool air in the room), I moved forward and stared up at one of the covered walls. Immediately I noticed that many of the plates appeared to be telling a story, which radiated out from the center of the plate and followed the circles until the outside edge. I also noticed that several of the plates seemed to have the same pattern painted on them (all by hand, I knew, since we had toured the factory prior to entering the showroom), albeit each in a different set of bright, carefully chosen colors. And then, halfway up the second wall and a little to the right, I saw it. And it was an instant, deep, and totally true love.

I knew I had to have the plate right away. The prices were marked on the back of the objects, but of course I knew from my parents' ongoing discussion with the owner in the next room that such things were wholly negotiable. Never mind that, though, I was determined to make this plate my own. As I reached for it and carefully removed it from its place amongst the others, I wasn't even sure why I was so drawn to this particular piece. The simple answer, of course, is that I've always had what my friends in college used to jokingly call an "inner raccoon", meaning that I tend to gravitate strongly towards things that are bright, shiny, and most of all colorful. The plate, of course, was all three of these things, and absolutely gorgeous to boot (trust me, the above picture doesn't even do it justice), but then again so were half the other things in that room, and none of them had made me whip out my credit card yet. I couldn't really articulate why I loved the thing, in other words, but I knew that I did, and that was enough reason for me to take the plate, turn, and rejoin the main room, the empty spot on the wall behind me a glaring testament to my refusal to separate myself from my plate for even a second longer.

As I re-entered the main room, my parents and the shopkeeper were just finishing their final cups of tea, having successfully arranged the purchase of not only their own jugs, but also a large serving platter for my sister (although in all fairness, I believe it was my sister who got the deal pushed through in the end -- the shopkeeper was very much interested in making sure the "lovely young lady" left happy). The old man, having secured his sale, turned towards me and his face lit up as he noticed the plate still clutched protectively to my chest. "Ah, the family print," he sighed, a reference to the fact that this particular plate held the concentric circle markings of his own family, the founders of the pottery mill and craftsmen for several generations. It was this pattern that I had seen repeated so often on other plates hanging in the room, though not in the brilliant reds, golds, and blues that made my plate so special. He scurried over to me and took the plate from my fingers, carefully tracing its textured surface with his own. "See here," he explained, "the central flower in the middle of the plate is the lotus blossom. A sign, in our tradition, of creation and perseverance, as this flower grows out of the mud from the bottom of the pond and emerges into the light above the water as a full and beautiful bloom." He paused and seemed to think for a moment before he added, "also, we say, it is a symbol of rebirth and new starts. The lotus folds itself away each night, disappearing beneath the surface to emerge again with the dawn." He broke out into a wide grin as I breathlessly whispered "perfect."

I didn't get much of a bargain for my lotus flower, especially when compared to the amazing deal orchestrated by the rest of my family in my absence. Maybe it was my refusal to sit down and drink another pot worth of scalding-hot tea, or the whiteness of my knuckles around the plate as I emerged from the dark room, or maybe it was something as simple as the way I held my breath as he described the plate's symbolism and the life-cycle of the lotus flower. Most likely it was my simple response, "perfect", that really did me in, although to be honest it really doesn't matter. I would have paid more for the plate, if I'd had to, and as it was the folded bills of Turkish Lira that I handed over seemed a weak offering for such a beautiful thing. It's amazing how money pales in the face of true love, after all.

5 months later I still look at the plate almost daily. I haven't yet hung it in my apartment, in fact, because I never could decide on the best place for something I love that much. Instead it sits on my kitchen counter, sometimes holding a couple pieces of fruit or some other object, but mostly just sitting there -- its open blossom a visible reminder of life, perseverance, and rebirth. And crazy as it sounds, there are moments when I just stand and stare at it, letting its color wash over me, and returning to the intense feeling of joy and rightness that I felt that first time I spotted the plate on a poorly-lit wall in a side room of a tiny pottery factory.

Today I tried my hand at recreating the bloom that I love so much on paper. It is, obviously, imperfect, but I wanted to try in honor of my friend (and many of yours also) who is living her last days in joy and peace right now down in Texas. She is, to me, an amazing example of rising up from the mud, growing through that dense water, and emerging above the surface as the most beautiful of blossoms. And although she might disappear again beneath the waters soon, I know she will continue to bloom in so many ways. So I'm dedicating this very humble effort to Courtney and her family, and to everyone awaiting a rebirth or transformation, as a reminder that what comes from mud can be beautiful, and that what at first seems delicate might be, in fact, the very picture of strength and what it means to persevere.

Monday, November 23, 2009

Musings on a Birthday Week

If I had known earlier that at age 28 I would need a lung transplant . . .

I might have appreciated all those summer hikes and winter ski trips that my parents "dragged" me on in the Colorado Rockies throughout my childhood, instead of whining about sore feet or cold fingers;

I might have played a little harder, or laughed a little louder at the really silly, ridiculous, little things like that time that my friends and I dressed up as "fashion models" and took homemade glamour shots in my bedroom with my tiny little pink camera (and I might even have saved some of the pictures);

I might have been surprised to know that one of my fondest memories now, living life in the biggest city in the country, is of lying outside in tiny little Oxford, GA (after driving at 3am to get there), looking up at a total universe of stars, watching a meteor shower with two of my best friends, and wondering how it was even possible for there to be that much light and that much enjoyment even in the middle of the night;

I might not have fought so much with my sister over nothing, because that was a total. waste. of. breath. (in every sense of the word);

I might have sung along even louder at all of those Indigo Girls and Dave Matthews Band and U2 and Elton John with Billy Joel and Bob Dylan and Ben Harper concerts that I went to throughout college (and yes, even one embarrassing but very fun Backstreet Boys show);

I would have really, really savored that road trip from Berkeley to Denver, even the stop off in Vegas and the stay at (where else?) New York, New York Casino;

I totally wouldn't have changed a single thing about that trip to Greece after the NY Bar Exam, especially not that strawberry moonshine we drank on that final night in Athens, or the restaurant with the view of the Parthenon at sunset, or the donkey ride through the streets of Santorini, or even that stupid mountain I was "forced" to climb on Delos to get to that bunch of scattered rocks (whoops, I mean, "awesome ruins");

I would have fallen on my knees in gratitude for the greater plan when I met Sammy back in 2008, because who could handle waiting for lungs without a live-in best friend to keep you company?;

I would have rocked every pastel-colored bridesmaid dress I've ever been asked to wear (you know, more than I already did totally rock them, of course);

I would definitely have used that "Welcome to Graceland" keychain with the ridiculous picture of my sister and me with the fake Elvis on it (I'll give you two guesses as to which of us was sporting a full-on crop top -- hint: Erin has better taste than I do!) and I would have laughed every time I got in my car or opened my apartment door;

I might have realized earlier just how amazingly connected we all are, and I might have had the foresight to treat every stranger I met like someone who might save my life someday with an indescribable gift;

I would like to say that I would have cherished these lungs for all they've been worth to me for the past 28 years, but I know that I was too busy living to truly count each breath, so instead I'll just take a second now to say to these "old" twins: thank you, for all that you are and all that you helped me do. I forgive you for any tantrums you might ever have had, which were, after all, a part of me too;

I might not have changed much, but I sure would have noticed it all a whole lot more.

And now that I know, I can at least take the time to just that. Hopefully for a long, long time to come.

Saturday, November 21, 2009

Ode to Prednisone: A Late-Night Performance

Prednisone, oh Prednisone
Wherefore art thou . . .
so. freaking. annoying????

It's 1 am. I'm tired. Really. Honestly. Actually, "exhausted" might be a better word for it. I feel as though I could literally just let go and sleep for a day.

Well, I feel as though I could sleep for a day, that is, if I weren't on 40 mg of prednisone daily as part of a short "burst" up from my maintenance dose of 10mg.

Seriously, what is it about this drug that makes it both so effective and so totally, completely, beyond-a-doubt, and over-the-top, just plain evil?! I mean, don't get me wrong, I'm beyond grateful for the decrease in inflammation and increase in general breathing ability, plus gotta love the fact that I won't be blindsided by the steroids post-tx since I'm already way too familiar with them anyway, but still. Have I mentioned yet that it's 1 am?

This. Is. Ridiculous.

Bright side: thanks to my dear friend Mr. Prednisone (yes, prednisone is male, and with "friends" like these you definitely don't need enemies), I'm less likely to wake up coughing and needing airway clearance at 4 am, which has been my usual pattern as of late. So maybe I'll actually be getting more sleep? Hmm . . . seems unlikely, but I'm willing to grab ahold of it as a possible "silver lining" at this point. Okay, so I'm grasping at straws here people, but then again what did you expect?

I'm on prednisone, remember?

It's not as if all this extra energy doesn't have some advantages though, I guess. I mean, I enjoyed some serious quality time out with my parents tonight over a fabulous dinner and still had it in me to walk over to Times Square and pretend to be a tourist for a while. And of course this was after everything else today: after filming and playtime with Sampson and bonding with my dad over our shared sense of hypercompetiveness (let's just leave it at the fact that we got our game on in several different activities, and I unfortunately lost at most of them -- whatever happened to fathers letting their daughters win??). So you can see why my body is exhausted.

Yeah, it's just too bad my mind is too hopped up on drugs to follow suit.

Anyway, I've decided to put the energy where it belongs: into a quick celebration of everything that is so right with my life right now, because even the worst case of 'roid rage isn't enough to cancel out the fact that I'm blessed beyond measure. Blessed with an amazing, compassionate, and wise doctor who only uses this drug in large doses when I need it but who never hesitates when I do. Blessed with a dad who pushes me enough to never just "let" me win (but who loves me even when I lose). Blessed with a family able to come into New York for the holidays. Blessed with meds that work and veins that are still holding on. Blessed to have a great guy to take me to dinner tomorrow and a lot of fun planned for the upcoming week. Blessed to be almost 28 years out with my original lungs and to have new ones on the way through a great center. I am blessed, and I hope that I can cherish every minute of it for myself and for people like Ronnie and Court and Eva and Kelley and Sara and Sam and Libby and Beth and Patti and all the other cystics out there who I could never name but who inspire me all the time. I'm trying so hard to hold onto this knowledge tonight in the face of a deep loss for the entire CF community, but seriously, blessed doesn't even begin to capture it.

Luckily for me though, I'm totally wired (1:30 am and counting), so I have plenty of time to savor every blessed little moment.

Friday, November 20, 2009

We're Number 1!

Yesterday was a loooong day of filming for the CFF! We started out at my house with personal interviews about life with CF and waiting for transplant, then moved on to the hospital where I had appointments with both my vascular surgeon and my CF doctor. The filming finally wrapped up with some "B roll" footage of my sister's art gallery opening (so cool!) and some shots this morning of the family and treatment time, etc. Add to that the fact that a homecare nurse came at 11 pm last night to start a new peripheral, and you've got a recipe for a very long, exhausting, wonderful, fun, and somewhat surreal day.

By the way, for those of you unfamiliar with the American Airlines Celebrity Ski event benefiting the CFF, check out the website here (just make sure you click on the Ski event for CF, rather than the equally worthy golf event for breast cancer!). The event is a major national fundraiser for the foundation, and has played host to tons of great celebrities who give their time, effort, money, and talent to help find a cure (To name just a few: Rosie O'Donnell, Jeff Dunham, members of the cast of the original 90210, Denis Haskins -- aka, Mr. Belding from Saved by the Bell, and MacKenzie Rosman of 7th Heaven, whose own sister recently got her wings after two years of breathing CF free thanks to a transplant). Each year around 1,000 participants gather together to ski, have fun, listen to amazing music, enjoy comedy shows, and most of all, CURE CF! I have been truly blessed and honored to be a part of this event almost from its conception, and though I can't travel out to Colorado this year because of the transplant, I know that they'll be kicking some CF butt in my absence. Just a HUGE thank you to everyone associated with the event, and also to the awesome crew from MultiImage media that came to shoot the film.

Okay so on to more immediately relevant stuff. As you might have guessed from the above mentioned IV nurse, I'm not off the drugs. My visit with my CF doc went well, but my PFTs are down just a bit and I'm still coughing even after 18 days on the big guns, so we're gonna keep them coming. My biggest worry was getting caught over Thanksgiving week with no IV and no doctors around, so I think it's better this way. And yes, it sucks not to be IV free for the holidays, but it would suck a whole lot more to feel like crap and be coughing up crud. So this is probably a good thing -- call it a nice gift wrapped in kinda depressing paper. I know once I open it and reap the benefits of full health I'll be glad I did, but right now it's still in the corner with that ugly sweater from Aunt Dotty. Oh well, I'll just let it sit for a few minutes.

But if I'm still on the IVs, then at least I'm off the blood thinners! That's right, the clots are gone, the jig is up, and the "Not-Quite-So-Great PICC Clot Fiasco of 2009" is officially, and totally, OVER. How's that for a little holiday cheer?

And . . . drumroll please . . . I am now, officially, without a doubt, number 1 on the transplant list for my height and blood type. Wow. Give me a second to process that and I promise I'll get back to you about how I feel. Right now all I can say is that it is amazing, thrilling, and unbelievably humbling to know that I am next in line for this gift of life. Scary as all get out, sure, but also SUCH great news.

Okay, so we're number 1! And we're here, in NYC, enjoying the gorgeously mild and warm weather for mid-November, and the family that's come in for the holiday, and the fact that I'm going on nearly 28 years with these lungs of mine, and the fact that we have the weekend free to play with friends, enjoy some nice dinners, and generally have fun.

Because, after all, we're number 1! And we couldn't be more grateful.

Wednesday, November 18, 2009

Life Lessons

It's no secret that I believe in the power of positivity. Honestly, if my blog does nothing else, I hope that it shares with my family and friends some insight into my view of the beauty of life (with or without CF) and the indescribable awesomeness of every. single. breath. I don't always have much to offer, and I've never claimed to be any sort of spiritual sage, but these past few years and months and weeks and days of living with CF and living in general have taught me that this gift of life is too amazing to spend suffering, regretting, or blaming. And of course my fellow cysters and fibros have added so much to that understanding -- all of us together, at all our various stages of progression and illness, health, life, and happiness -- stand in my mind as a sort of monument to the fact that overwhelming joy and the will to simply live are so much stronger than any disease or any set of mutated genes.

That said, there are CFers out there tonight who are not doing well. These people are kind, sweet, loving, and good-hearted individuals, with friends and family who cherish them and hate to see them fighting or in pain. And in the spirit of the upcoming week -- that of being grateful for all that we have, loving others, reunions and coming together -- I'm asking that each of you take a few minutes for our fellow journeyers in need of love, strength, peace, comfort, and light right now. Whether it's a moment of silent prayer, a shared blessing with your friends/family/congregation, the sending of good vibes, or just a second of your time to celebrate life in honor of these people, I'm sure that they, and their families, would deeply appreciate it.

For Eva, whose story has inspired and educated so many;
Natalia, who has an infant girl to come home to;
Courtney, who has touched my own life personally, as well as many others in this community;
Ginger, who has a devoted husband and young son;
For all the others, past and present, who show us what it means to LIVE . . .

Thank you for your strength in the face of obstacles, for your faith and love and optimism, for allowing us all to share in your stories -- through the good and the bad, for the money you've raised and the drugs you've helped to discover, for the companionship, the friendship, and the community that we've all shared. I am deeply humbled to be a part of it all, each and every day.

I truly believe that CFers together can move mountains. Hey, we defy expectations and conquer limitations each and every day, so what's a little miracle among friends, right? Please, please, please give a little of yourself and your time and your heart for those in our community who could use a little something extra tonight. And to everyone who is sick or healthy; living with CF at age 5 months or 50 years; breathing tonight alone or on oxygen or on the vent; caring for a loved one or being cared for by those you love; climbing mountains or climbing into your hospital bed -- thank you so much for the inspiration and the lessons.

Tuesday, November 17, 2009


So I have a HUGE couple of weeks coming up with the holidays approaching. I can't even begin to say how excited I am and how much I have to be grateful for (as always) this year. It literally blows my mind when I think that in the next TWO WEEKS I will:
  • Enjoy out-of-town visits from my two best friends from college (one of whom was also my roommate for three years and is bringing along her boyfriend, who I've never met!), my father, my godmother, and my grandmother, along with a visit last night with a childhood friend I haven't seen since I was her bridesmaid several years ago.
  • Film a CF awareness video on waiting for transplant for the CFF's American Airlines Celebrity Ski event -- which I've been blessed to be a part of for over 20 years.
  • Attend a museum exhibit opening featuring some of my sister's fashion designs on display!
  • Stop IVs!!
  • Have a final follow-up appointment to hopefully end the "Not-Quite-So-Great PICC Clot Fiasco of 2009." Good riddance to bad rubbish.
  • Celebrate my godmother and grandmother's birthdays with dinner and a Broadway show.
  • Cook a Thanksgiving meal at home, to be enjoyed by friends and family in my own cozy little apartment, including my family's famous southern cornbread stuffing.
  • Celebrate my 28th birthday -- first with a family dinner, then a few days later with friends.
Wow. Okay, I think I just got tired typing that all up. Honestly though, I'm sooo ready to just enjoy this special double holiday (birthdays + TG) with some of my absolute favorite people. And when I remember that people are flying in from as far as Colorado, Texas, and California to help make all of this happen and to accommodate MY schedule, well, it just kinda starts to seem unreal. I don't like to turn this blog into a contender for the cheeseball of the year award, but right now I'm feeling pretty warm and fuzzy -- and I wouldn't have it any other way.

Anyway, since absolutely none of that had anything to do with the title of this post (or so it would seem), you're probably all a little confused right now. See, as excited as I am about all of the above, and despite all the many warm fuzzies swirling around and filling my head with visions of mulled wine and amazing homemade stuffing, I'm also a little, well . . . scared of it all, to be perfectly honest.

I'm nervous because I know that my health depends on following my routine, and we all know that the first thing out the window during huge family gatherings -- no matter where they happen -- is predictable routine. I also know that my body needs more rest than it used to -- that as fun as it is to push myself until I drop, it's not always the wisest decision in the long run. I'm ready as can be for all the nice dinners and social events, until I pause for a moment to remember that this year I'll have to make decisions about when to wear oxygen when I'm out on the town. And finally, as psyched as I am about all the yummy calories coming my way (a CFer's favorite part of the holiday season, for sure!), I can't help but remind myself that it might be tough to make time in between all that eating and socializing to hit the gym.

So what's a gal to do? I think in the past I pretty much wrote off the holidays as a bit of a free for all. As long as I stayed on top of my treatments and didn't overwhelm myself to the point of total sickness, that was good enough for me. After all, it's only a couple of weeks, and CFers are nothing if not masters of "pushing through it."

But this year, I'm approaching the whole thing from a slightly different perspective. For starters, I don't know when the call for transplant might come, and I don't honestly have two weeks to slack off on important things like my exercise routine, because who knows if I'll have the time to make those up after the holidays are over? Perhaps more important, though, are the promises I've made myself over the past year, like the promise to really focus my energy on getting STRONGER every day, and of course the promise to always consider my health -- because if I'm going to accept this gift of life from someone then I'd damn well better be ready to make the most of it.

Of course, I'm not planning to put a halt to any of the holiday fun. Health might come first right now, but it doesn't have to trump life (which is, after all, the reason we do all this stuff in the first place), right? So I've decided to make a simple change and ask one question that might make all the difference:

What Would Piper Do?

In other words, what would my body and spirit have me do over the long run? Sure, the turkey makes me tired in the moment, but that doesn't change the fact that Piper would still want to get in at least a walk. Much as I love to pack my days as full as possible, Piper has recently learned the value of resting and meditation to help de-stress and re-center. And yeah, sometimes I don't like the way the oxygen makes me look in public, but I'll bet Piper would rather wear the stuff and feel better so she can actually celebrate during all these birthdays and reunions. After all, despite my in-the-moment reservations, Piper is (hopefully) learning not to place so much emphasis on what other people might think, and maybe even to be proud of the cannula that shows the world that she can still get out of the house and have fun even while needing a little extra help. (Okay, so maybe not quite there yet, but making baby steps!)

I'm the first to admit that it's not a perfect approach. Piper, after all, is a lot of things, but she's definitely not perfect. I probably won't be able to market any "WWPD?" bracelets to the masses, and to be honest that's most likely a good thing. (Do we really need a bunch of Piper clones? Um, don't answer that!) But I am hoping that pausing for a second to ask myself this little question during the holidays will at least help me find that often delicate balance between life and all those other necessary things we CFers take on to manage our disease. Because when all is said and done, despite her many imperfections, Piper loves to savor things like holidays, food, friends, and family, and she also wants to be around to keep the fun going for as long as possible.

It's a tricky balance, sure, but this year I'm determined to try -- with a little help from Piper, of course.

Sunday, November 15, 2009

Dear Random Guy

Dear Random Guy Sitting Next to Me at the Movie Theater,

First of all, hello and welcome to my blog. You don't know me, and that's totally okay (a lot of people reading this have never even seen me in real life, so you've got one up on them at least!), but since you're here and reading you'll probably learn some interesting things about someone you previously just thought of as "that annoying girl sitting next to me." Things like the fact that I have cystic fibrosis, a genetic and totally non-contagious lung disease that, unfortunately, causes me to cough occasionally. Or the fact that I'm currently on home IVs, which means that I sometimes run a tiny bit behind schedule, which in turn means that I have to rush down to my seat in a crowded movie theater and might, just as unfortunately, be just a little bit loud and breathless about the whole thing. You might also learn, because I'm saying it right now, that it is never my intention to disturb anyone by any of these relatively annoying byproducts of my disease. In fact, when I'm really sick and coughing up a storm, you can bet that I would make a point of staying home and avoiding quiet places like movie theaters. Not because I'm a danger to others, mind you, but simply because it's no fun to cough your way through what should be a silent experience.

Okay, so now that you know a little bit about me, I want to apologize. Yes, that's right, I would like to sincerely apologize to you and your girlfriend for what happened at this afternoon's matinee. See, when I rushed in after a CF-related delay, bounding up the stairs into the theater to take my seat before the start of the actual movie, I knew it would likely make me cough a little bit. And I knew, equally, that the film was just beginning and that people around me might not be entirely pleased. I did not know, of course, that anyone would take it upon themselves to voice the opinion, out loud, that "people who are sick should just stay f-ing home" (censored for the benefit of other readers, but then again we both know what was said), but I guess I could have been better prepared to give an appropriate response.

Instead, I snapped. I leaned over, as you know, and hissed in your face that my condition was genetic, akin to asthma, and nothing that you needed to worry about catching. And I'm ashamed to admit that I didn't say any of this politely; I didn't shrug it off and turn the other cheek, knowing that your comment was said in frustration and ignorance of the whole situation, nor did I calmly touch your shoulder and whisper that it wasn't contagious or that I would be happy to explain after the film. I didn't even pause to consider that perhaps you have your own valid reasons to fear germs, and were simply voicing a concern about being stuck next to someone with a possibly contagious illness. Nope, I did none of that, but I did make myself heard, and for that -- for the way I did so and the hostility in my voice -- I am very, very sorry.

You see, the thing that's hard to explain is that, for someone with chronic illness -- and especially a sometimes loud chronic illness -- the little comments and eyerolls and other most likely well-intentioned little gestures (cough drop, anyone?) can sometimes get a little overwhelming. Not that such an explanation explains or excuses my behavior because, quite frankly, it doesn't. After all, your comment was offensive to me precisely because it failed to take into account the totality of my situation, and yet my response was in fact no better. I responded to you without much thought for your feelings, your experiences, or even the best ways to spread CF awareness. Sadly, in doing so, I may not only have lowered myself to bad behavior, but I might also have missed a chance to truly educate someone about CF. Because this time, when the credits rolled and the house lights came back on, we both shuffled out without a word.

I am truly, deeply sorry.

So, Random Guy, I hope that you went home tonight and thought a little bit about that awkward interaction you had with the annoying woman at the movie theater, because it's been on my mind all night. True, I'm not proud of the way I acted, but I can hope that I've learned at least a small lesson about taking things in stride and not responding in anger, especially to strangers whose stories I don't know. And perhaps if you take the same lesson away from this all, then our meeting might not have been wasted after all.

And we can both be a little bit more proud of ourselves next time when the house lights come back on.

Coughing Girl

Friday, November 13, 2009

Peripheral Vision

Okay, so if you've been following this blog at all for the past few weeks/months, you're probably familiar with the event that I've now termed "The Great Port Debacle of 2009" and its subsequent less-dramatic, but equally annoying, little sibling, "The Not-Quite-S0-Great PICC Clot Fiasco of 2009." These two events happened within a few weeks of each other (although the Port Debacle had, in fact, been going on for several months prior to its actual diagnosis) and made for a very exciting, if somewhat over the top, end of summer/beginning of fall.

Ah, memories.

Anyway, those days are long gone, and, like any good CFer, I've pretty much moved on to the next big thing at this point. And that thing just happens to be . . . (cue the drumroll please) . . .

peripheral IVs.

View of my arm, circa 1989 (er, I mean yesterday)

So call me old fashioned. Call me old school. Heck, call me retro if you must, just please don't compare me to the Lower East Side Hipsters when you do it. The point is that my veins and I have been partying like it's 1989 for the past week and half or so, and weirdly enough, it actually hasn't been too bad. I mean, aside from the hair bands, the teased bangs, and the Saved by the Bell reruns, we've been managing just fine during our little trip down memory lane. In fact, to date I've had only 4 peripherals in 12 days, and considering that one lasted less than a full day and hardly counts, I'd say that's a pretty decent record. Especially when you add in the fact that most of the placements have been home runs, meaning the line is placed on the first try. Actually, scratch that -- it's not just "pretty decent", it's all out amazing.

I'm pretty sure that I owe this miracle of vein cooperativeness to my 9 1/2 years of portdom. Prior to getting my port, my veins had pretty much put out the "closed for new business" sign when it came to either peripherals or PICCs. Rolling, spasms, collapses, general refusal to give a blood draw -- you name the game, my veins have played it. I'm pretty sure I used to hear an audible groan when I walked into the IV lab for my placements, and nurses have been known to change shifts just to avoid my "veins of terror", but try telling that to my new awesome home health nurse, Janice, and she'd probably just laugh. Because as far as she's concerned, 9 years later, my veins (while perhaps a bit overused and overtired) are nothing more than petulant children waiting to be coaxed into line. What a difference a decade makes, I guess.

There's a lot of debate raging right now amidst my doctors about whether I should remain catheter-free or go for another port. Pre-clot we had agreed on a course of action, but now it all seems up in the air. The thing is, though, I'm suddenly a LOT less anxious about the prospect of going into transplant and beyond without a permanent IV line, now that I know my veins have managed to resurrect themselves to some degree. And it makes me, in retrospect, all the happier that I got the port placed when I did, because I'm thrilled that I managed to save at least some use of my veins for later -- after all, as permanent as a port might seem at the time, you never know when you're going to lose it.

For now, though, I'm happy just to be the old-young cystic with the outdated IV in her forearm. I haven't managed to score one of those nifty IV boards they used to give me at Children's Hospital yet, but it's still pretty darn cool to know that I don't have to get a PICC pulled at the end of all this. And yes, I used the word "nifty" without even a trace of irony, but that's totally allowed when you're going peripheral . . . or so I've been told.

Thursday, November 12, 2009


Tonight I got asked (indirectly) by a perfectly nice, normal person whether I thought being a lawyer had negatively impacted my health. No, she wasn't making a cute "attorneys are evil" joke -- although I was tempted to respond that my lungs were crappy even before I became a lawyer, but the loss of my soul took some getting used to. Ha, ha, ha, right? But no, she wasn't making a joke; she was actually quite serious and she was asking a question that probably others have wondered about as well.

The implication of her question (I think, as I said this woman was very nice and certainly didn't mean any offense) was that perhaps my job, back when I worked, was too stressful or took up too much of my time for me to really focus on my health. Or maybe she thought that I let my health slide because I was more focused on other things. Perhaps she was wondering if law school itself was too much of a strain, or if the 7 years in higher education was a good use of time for someone with a "fatal" lung disease. Maybe she just wondered whether it was "worth it" time wise for me to be so tied up in school when life is so precious. Maybe she didn't think through any of this and just asked the question because she was surprised to see someone with CF and a law degree -- especially someone waiting for transplant.

So in the interest of answering her question, and because I think it's an important topic given how important both my career and recent choice to take disability leave have been to this blog, I'm going to be totally honest here:

1) I can not now nor will I ever be able to say with 100% certainty that my career choice did not negatively impact my physical health; and
2) If I had it to do all over again tomorrow, I wouldn't change a single thing.

Let me tell you what I do know with 100% certainty. I know that I wanted to go to law school. Badly. It's what I wanted to do with my life, and completely independent of CF it had been my dream for a long time. I know that my health had begun to decline prior to entering law school, although my first couple of years there were not themselves extremely eventful CF-wise. I know that although my job was stressful and at times difficult, my compliance and time-management skills steadily improved throughout the time I was with my firm, actually increasing my chances of staying healthy in many ways. I know that I learned through my job to assert my needs as a CFer as well as a person, asking for days off when I needed them, learning to surrender to the hospital with grace instead of dread (okay, grace MIXED with dread!), and finally grasping how to ask for help when I needed it. I know that I equally learned how and when to push myself, what my limits really are, and how great it feels to meet a challenge everyone else said was impossible for me. I know that it was law school that brought me to New York, the city I love, just as I know that it was also law school that brought me to the doctors I trust with my life, whose advice, help, and wisdom I am so blessed to have experienced these past few years. I also know that when I finally did take disability leave, it had no apparent effect on the intensity, frequency, or general nature of my lung infections, but it did negatively affect my mental health and well being.

I know that I will never look back and think that CF held me back. Most of all, I know with 100% certainty that if I had to look a child with CF in the eye right now and say that it was worth it, I would do so without a second thought.

I don't believe everyone should go to law school, CF or no CF. That was my dream; it could just as easily be someone else's nightmare! But throughout my life there have always been people who have cocked their heads, pursed their lips, and wondered (sometimes out loud) whether I should be doing whatever activity it was that didn't "mesh" with their expectations for a CFer. And I do believe, very strongly, in defying those expectations and false limitations set on us by other people, or sometimes even by ourselves. Because the CFers I know are an amazing group of people -- and I really just refuse to believe that there's a spectrum of life that we cannot or should not participate in just because of our disease.

Maybe that makes me stubborn, but I'm 100% certain that it also makes me happy.

So would I still need a transplant if I had been, say, a sculptor instead of going to law school? Well, maybe, maybe not. I just can't say. In fact, I can't say how any single aspect of my life might have turned out differently had I made different choices along the way. It's not my job to know that, frankly, and neither is it anyone else's on this Earth. But what I can say is that if I had been a sculptor, well . . . I wouldn't have been a very good one, nor a very happy one. Trust me, my experience with the pottery wheel in Turkey when they tried to help me make a vase (end result: poorly constructed ashtray) was enough to teach me that much.

In case you're wondering, my real answer to the question was far more simple and to the point than this blog. I simply looked at this kind, well-meaning, and genuinely concerned woman and told her that I would never know why my health is what it is, but that I had made the decision to stay in the driver's seat of my own life for as long as I have it, and let my CF come along for the ride.

It may not be perfect, but that's definitely my final answer.

Friday, November 6, 2009

Another Day

For those of you who are wondering, it's just another day here in New York City.

Just another day that started out here . . .

. . . and finished up here.

It's another day filled with IVs and nebulizers and oxygen and chest PT and enzymes and antibiotics and dermatology students (not kidding) and discharges that actually happened ON TIME (nope, still not kidding) and doctors wearing "droplet precaution isolation" masks in my room even though I'm officially negative for swine flu just because I still had the sign on my door because I'd really prefer everyone mask/glove/gown up anyway.

Another day of downtown taxi rides and puppy reunions and homecooked (non-hospital) meals and comfy (non-hospital) beds and views from my (non-hospital) window and TV watched from my comfy (non-hospital) couch and maybe even some mild (non-hospital) meditation.

It's another day of gorgeous fall weather and chilly breeze and possible new developments on the transplant front but who wants to think about that kind of stuff anyway because today is just another blessed, wonderful, fantastic, flu-free day that is all about going HOME!

And home is where I plan to stay.

Thursday, November 5, 2009

Keep on Keepin' on Like a Bird That Flew . . .

Random Sidebar/Fact of the Day: LOVE Bob Dylan. Love the above-mentioned lyrics. Love listening to my ipod while gazing out the window at the Hudson river and the George Washington Bridge. Love having nothing really better to do than sit around on 5 liters of O2 because I can't leave my room due to hardcore isolation protocol . . .

Whoops, took that one a little too far.

Okay, so the past couple of days have been, um, "eventful", and not so much in a good way. After my super fun day at the races (literally) on Sunday, I was all set to get the H1N1 vaccine and then start IVs on Monday for a quick tune-up. My lungs sounded better than they do with hardcore infections, and my PFTs were still stable, but my increased cough, lung goo (sorry, it had to be mentioned), and the recent growths in my cultures convinced us that we should act early rather than wait. So I started the IVs on Monday evening and settled in for what everyone expected would be a fairly easy and uncomplicated round of drugs.

Then again, if CF has taught me anything, it's to expect the unexpected.

Monday night I ran some medium-grade fevers (around 101) and was a little achey, so I called my doc and we all chalked it up to most likely a vaccine/IV drug combo, especially since it's not uncommon for me to run some fevers at the start of IVs. This theory seemed to be confirmed by a lack of fevers all day Tuesday, although I was tired and a little achey. Tuesday night, though, my fever spiked up to 103.5 and simply wouldn't BUDGE for about 4 hours. Call the doc again, start TamiFlu immediately, check in again in the morning. Wednesday morning, O2 is down, but fever is also only around 100.5. Still no sign of a sore throat, additional cough, or headache -- just achey and feverish. By Wednesday afternoon, when my fever went back up to 103.5, however, I knew I was destined for an all-expenses paid vacay at my favorite "Club Med" -- and sure enough here I am.

Surprisingly though, I haven't run any real fevers since coming here. They brought down my initial fever, were able to hydrate me thoroughly through the IV, and since then I've felt SO much better. My O2 levels are still low, but that's why God invented nasal canulas, right? And they're holding steadily above 95 on the increased dose, which means the old fighters are still working, if a little compromised right now. I have faith that those numbers will bounce back -- they always seem to for me, thankfully.

Now for the REALLY good (if only preliminary) news: early results show that this is NOT swine flu! We're still waiting on the more advanced, more accurate test, but if that comes back negative tonight and I have no fevers through the night or tomorrow morning, I should be free to leave and go home to Mr. Sampson by tomorrow afternoon. Totally visualizing that negative flu result now!

They do think these fevers might have been drug-related after all. My amazing team here includes my wonderful CF doc, as well as two fabulous doctors from infectious disease and vascular surgery, so I'm pretty confident that whether this is drug, virus, or clot related they'll figure it out eventually. At this point, though, I'm just happy to be seemingly on the mend.

I don't mind sharing that this whole flu thing had me pretty freaked out. I'm so sick (no pun intended) of seeing people with CF struggle with this virus and other complications. I hate knowing that life is so fragile that it can hang in the balance of a cough not covered, or a hand not washed, or any other of a number of factors. I also know that this is true for people regardless of whether or not they have CF -- I guess it's all part of what makes life precious at the same time. Still, it's never easy watching your friends get sicker, whatever the cause. I feel blessed to have so many wonderful cystics in my life -- the friendships are really amazing and I wouldn't trade them for anything -- but it still hurts to have to say it: breathe easy, Lauren. You'll be missed.

I have a lot more news to share on the transplant front, and hopefully will be able to update soon when things are a little more certain. And for now I'm just going to keep on keepin' on, and hopefully be home in time for dinner tomorrow.

Monday, November 2, 2009

Piggish Post

This little piggy lived in New York
This little piggy got sick of staying home
This little piggy called about the swine flu vaccine
But everyone said they had none
So this little piggy pulled major strings*
And this little piggy GOT IT DONE!

*Note: The pig from the above rhyme wishes to make clear that she does not endorse "pulling strings" or in any other way demanding special treatment under normal circumstances. Said pig, however, has been known to make exceptions to this general rule in instances where there are wide-spread shortages of a crucial vaccination for which the pig is considered "high risk." Does this make her a bad little piggy? Possibly. Is she willing to apologize? Nope, not a chance.

Okay, I did it. I got the H1N1 (swine flu) vaccine. Actually, I'm going to bite the bullet and be completely honest here: for someone who initially wrote this post, I ended up being pretty much a big wuss when it came right down to the wire on this one. I was more or less told repeatedly by my transplant center that I needed to get the vaccine BEFORE the surgery, and that I should seek it out wherever possible, but NY prioritized school children over high-risk adults (a legitimate decision, for sure, but not one that made my life any easier). And when other CFers I knew started to contract the virus, it definitely struck a chord with me. I think it's fair to say that for the past couple of weeks I've been on 24/7 "virus patrol" -- most of my friends and family now assume that I'm officially a germaphobe. They're not wrong.

Anyway, it all came to a head after I ended up in the ER for the clot and spent the next week more or less tied to my thermometer and ready to spring into action (and TamiFlu!) at the first sign of a chill or muscle ache. Not entirely productive, considering the weather was having a great time playing tricks on me by going from hot to cold -- love autumn in NYC, by the way -- and I of course was still suffering from the aforementioned clot, which unfortunately also causes pain and acheyness. Awesome.

Basically, a very uncool way to live. And definitely not good considering that the holiday season is fast approaching in NYC, with its massive numbers of tourists that this year will also include my own family. Suffice it to say that I was NOT down with the prospect of holing myself up and missing all the holiday fun.

I finally did track down a clinic with the H1N1 vaccine, but they were doing a very long, intensive pre-screening process and it soon became really clear that waiting on their ridiculous and not-so-efficient system wasn't going to get me the vaccine any faster. Plus I wasn't thrilled about the whole "public flu clinic" scenario -- not to sound snobbish or anything, but I really didn't want to be exposed to the virus while waiting to be vaccinated.

So I got on the phone and started calling basically anyone I thought could help me with this one, and eventually someone came through. I won't name names here, but suffice it to say I have some very wonderful and amazing people willing to go out on a limb for me. Within 24 hours of stepping up my search for the shot, I had a dose of the vaccine "reserved" for me to get on Nov. 1st. Granted, I did end up having to go to a pediatric allergist clinic, which involved a waiting room full of somewhat ill children, but the nurse was nice enough to get me in ASAP, give me the shot in a private office rather than an exam room, and then send me out into the not-so-germy hallway while she processed everything before sending me on my way. Thank goodness for compassionate and smart nurses who understand high-risk patient protocol. To say that I'm grateful for the chance to have the vaccine is just about the understatement of the century.

Honestly, I'm not normally a worrier when it comes to viral infections, although I do try to be cautious. I hate taking my health fears overboard and I've never been one to stay behind just because of a potential virus scare. But these last few weeks have seen the CF community (particularly adults, from what I can see) get hit hard with this flu. I don't say that to scare anyone (and I do plenty of CFers who have made full and uncomplicated recoveries, to be sure), but in the humble opinion of THIS little piggy, now is definitely the time to be calling your local health department, bugging your clinic, calling your local CFF chapter, and taking whatever steps are necessary to ensure that you're as protected as possible from this particular virus.

As for me, I'm looking forward to enjoying the holidays this year . . . and not just from my apartment window.

Sunday, November 1, 2009

Fighting CF Never Looked So Cool

This is Ben:

This is Ben 25+ miles in to the 2009
New York Marathon:


So as you might have guessed by now, this amazing, fantastic, and pretty much all-around-rockstar guy named Ben ran the New York Marathon this morning. 26.2 miles through all 5 boroughs of New York City. Or, to put it another way: hardcore.

What you might not know is that Ben ran this marathon to support the Boomer Esiason Foundation, and that in doing so he single-handedly raised about $4,000 to help fight cystic fibrosis. Seriously, did I mention this dude is a total rockstar?

I get asked all the time about the transplant process and what it's like to be waiting on something like this. My answer? Honestly, it's an amazing feeling to be as surrounded by as many unbelievably awesome people as I am. To have people in my life who are willing to take their first time running a marathon (HUGE accomplishment, by the way) and use that event to help fundraise and spread the word about CF is, in a word, indescribable. And I know this might sound cheesy, but who can imagine not fighting to stay healthy (through the infections and the port removals and the blood clots and the H1N1 pandemic) when there's someone out there who is strong enough to run 26.2 miles, and kind enough to do it all in honor of finding a cure?

Someone kinda like, well, this guy:

It all sort of leaves you breathless -- in the best possible way.

PS: Ben totally doesn't read this blog (he gets enough of my snarkiness in person), but I told him he'd be featured on it tonight and he just might be checking. So if you want to say thanks to someone who not only ran for CF, but did the whole race in under 5 hours (ahem, rockstar, ahem), feel free to do it here!