**Blogger Challenge: Emily's Entourage**

You know how every so often you come across someone who is smart, kind, loving, beautiful, and 100% devoted to making a difference?

A few weeks ago one of my good friends and fellow CFers, Emily, contacted me with an idea and a vision. Apparently some of her close friends and family had recently participated in a stair climb for the Cystic Fibrosis Foundation, and (as so often happens when we climb to new heights together for a cause we believe in) they had left the event feeling inspired, energized, and ready to do more. And that "more" in their case came in the form of a video, spearheaded by Emily's brother, that was designed to make something happen for people with cystic fibrosis.

When I first spoke with Em I was impressed by her commitment (she and her friends had already filmed the video and were working on a website) and by her drive to make a something happen in the CF world. "Wow," I remember thinking to myself, "this girl is talented and eager to fundraise. Awesome." Before she even had two words out of her mouth I was plotting ways to leverage her connections to bring us one step closer to that cure.

But when I sat down to actually view her video -- with her still patiently waiting on the other line, no less -- I found myself actually left speechless. Far from simply asking for donations from her viewers, I realized, this girl was asking for participation. She was asking for each person who saw the video and felt connected to her message to donate what they could and then to pass it on. To share the vision. To advocate for themselves, for their children, for their siblings, for their friends, and for everyone else with cystic fibrosis. She was asking, in other words, for more than money -- what she wanted was a movement.

And so, in the spirit of Emily's vision and the power of her devoted "entourage", I am asking each of you to take her challenge.

Please everyone, take a moment to view this video (and have a box of tissues ready when you do so, because you'll need them!). Take a second to contemplate all the love and energy that is reflected back on you from the screen. Remember, if you can, that this is a video put together not by workers in an office or by someone hired to do it, but by a wonderful and hugely inspiring woman, graduate student, employee, daughter, sister, friend, and activist who actually needs this cure. Then think about what it's asking for -- a couple dollars, a couple seconds of your time, a couple words for you to spread the message to your friends that this is a cause that can't wait any longer -- and see if you can really find in your heart a good excuse not to make that small request happen.

Yeah, I couldn't find one either.

So with all respect, love, and faith in the unbelievable power of this community, I'm officially declaring this to be the latest and possibly greatest "Matter of Life and Breath Blogger Challenge: Emily's Entourage Edition." Here are your official rules for participation:

1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).
2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.
3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.
4) Comment back here with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!
5) Re-post these rules on your own page.

Drawing will be held on Dec. 16 (2 weeks from today!).

**As always, you do NOT need to link back to my blog on your site. However, only those whole leave a comment on this post will be entered into the drawing for the prize. Non-CFers and community members of all genders, ages, sizes, and disease status absolutely encouraged to participate.**

**Blogger Challenge: Personal Disease Perspectives**

I recently got asked a question by a CFer who was worried about her upcoming evaluation for lung transplant. She wrote me a very thoughtful and articulate email about the subject in which she noted that she did her vest 2-3 times every single day, took every enzyme and pill exactly as prescribed, and worked out 3-4 days a week on average despite her steadily dropping lung function and ever more frequent lung infections. She also noted that she sees her doctor at least monthly and goes on IVs every 3 weeks or so, during which time she carefully schedules her infusions to be exactly 8 hours apart and makes sure to follow any additional treatment instructions (such as extra rest or spacing out her calcium from her cipro) that her doctor might recommend. She follows a detailed dietary supplement plan worked out in consultation with her nutritionist and, in her own words, she "tries very hard not to let [her] mind make excuses for any lapses in [her] responsibilities to [her] body." She told me all of this, and then she posed a simple question: "Should I be worried that the lung transplant team at my hospital will decide I'm not a good enough candidate for lung transplant?"

Wow.

Faced with this sort of question, my first reaction was exactly what I hope all of yours was too, meaning that I basically just sat there staring at the email in shock and then started to re-read it to figure out what part of the puzzle I must be missing. "Good enough candidate" was her exact term, and for the life of me I couldn't understand why she was questioning herself like that. After all, the entire message leading up to that point was basically a textbook description of the perfect patient, someone both mentally and physically committed to fighting her disease and maximizing her chances for survival even in the face of some pretty tough obstacles. I thought surely she must have some other underlying health issue or random skeleton in her closet (did she smoke? was she secretly selling her antibiotics on the black market?) that she wasn't telling me about. Otherwise why would she possibly be worried that her transplant team would reject her? What would drive a diligent, motivated, and obviously smart young woman into a crises of confidence so severe that she was, essentially, wondering whether a panel of doctors would deem her "good enough" for a life-saving procedure?

So I asked her.

Turns out this young lady was worried not because of her compliance record or her past medical history or anything else having to do with her behavior either as a person or as a patient. She was worried precisely because, as she put it, "I keep reading stories about how people saved themselves through exercise, compliance, and changing behavior. I feel like I've tried everything, but my FEV1 is in the toilet and it keeps sinking lower even when I do everything I'm supposed to do. How do I know the doctors even believe me at this point that I'm trying my hardest to make things better? How do I even know I'm not missing something?"

Okay, I'm gonna say it again: wow.

The moment I read those words, I started crying. I feel like this young woman summed up perfectly the frustration, self-doubt, and fear that a lot of CFers unfortunately feel when they suddenly start to lose control over their health. CF is a crazy disease in that it is controllable, to a point, through proactive care, self-responsibility, and treatment. But that whole "to a point" caveat is where things start to get tricky, because for some people the "point" seems to be around 90% control, whereas for others it seems to hover much lower. We're all pretty used to hearing that each CF case is different and that genetics, compliance, environment, and lots of other factors all play into our personal progression with the disease. But what about the fact that even two people with the exact same mutations, same FEV1, same bacteria, and same exercise program can still experience different results? How do we account for that in a medical system that, understandably enough, has to quantify things like Lung Allocation Scores and the risk of non-compliance after transplant based on general assumptions like "people with a 45% FEV1 are less sick than people with 29%" or "these treatments work, therefore patients who take them appropriately and as directed should see improvement"?

I think this email also struck a personal chord with me because of my own recent experience post-transplant. It's weird, I feel like I've been relatively healthy, but I'm also not blind: I can see that most people at my center don't seem to spend nearly as much time on IVs or fighting weirdly yo-yo like PFTs as I do. And if I'm 100% honest, hand on heart, I'd also have to admit that I've had a few "what the heck am I doing wrong?!" moments -- times when I have literally freaked out at myself for the perceived "sin" of getting another infection, or having a low prograf level, or not blowing hard enough during the testing. I actually had one moment when a PFT tech asked me if I understood the proper technique for the test and I very nearly forgot that I've had close to 30 years experience with this stuff before I stammered out a meek little "um, I'm pretty sure I know how to do it."

For those of us who might be dubbed "crazy control freaks" by others (I personally prefer the term "highly motivated, results-oriented individuals who might admittedly be somewhat crazy"), accepting that there are parts of our bodies that might not be 100% cooperative is challenging, to say the least. We have faith in the power of individual action, and when it fails we feel judged and inadequate. For others who are good at grasping the uncertainty of life with a progressive, chronic illness, the challenge might instead lie in keeping a sense of personal responsibility in the face of what seems like an invincible enemy. There's judgment there also (probably as much by the control group as anything), as well as a sense of powerlessness. Oddly enough, both of these approaches can eventually lead to the same point: a deep-set fear that our disease is in charge, and that nothing we do will ever be "good enough" to stop it. In the worst case scenario, both approaches might even cause actual non-compliance, with patients adopting the mindset that nothing we can do as individuals actually matters when it comes to fighting CF. (And yes, I know this from personal experience. I spent a good part of my teenage years convinced that if I couldn't fully control every single aspect of my CF then I was failing and should more or less just stop trying. I'm embarrassed to admit how long it took me to snap out of that trap.)

This is somewhat of an oversimplification, of course. As lifelong patients, most of us will fall into both camps at some point or another, switching sides seamlessly as we get older, or sicker, or go through different life phases -- or even adopting different views for different issues (those who might be hardcore when it comes to doing treatments, for example, but nonchalant about the power of exercise). It's more of a spectrum than a true dichotomy, in that sense, with a whole lot of middle ground in between the two extremes.

So since I couldn't really answer the question (well, sort of -- I did write that I would personally go down there and tell off her transplant team if they dared decide that she isn't "good enough" for new lungs), I've decided to put it to a panel of experts in an official "Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition." Here are the rules of the game:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Much love, light, and healthy debate to all of you, beautiful people.

A Few Things

1) Thank you all SO MUCH for the comments and critiques on my "positivity" blog post. This was far and away the most successful "blogger challenge" we've had yet on A Matter of Life and Breath, and I have had SUCH a good time reading everyone's very informed, honest, and interesting perspectives. For those of you who would like to read more, here's a list of some of the blogs that featured discussions on the topic (sidenote: if your blog is not on this list and you have written or plan to write on the topic, please let me know and I will add it ASAP). Also, a HUGE thanks goes out to Ronnie and his always amazing Run Sickboy Run for bringing a lot of really great people to the table on this one. You guys continue to inspire and impress me, as always.

Welcome to Joshland
I Have CF So What
A Day in the Life of a CF Mom
Jamiebug's Cepacia Lung Transplant Blog
Lovin Lane
Breathing You In

(As I mentioned, I really hope to grow this list if people have more to say -- and if you're anything like me, there is ALWAYS more to say! -- so please keep them coming, and feel free to alert me to any blogs not yet on the list. I try my hardest to keep up with the CF community blogs, and if I'm missing one I always want to know!)

2) Transplant tidbit of the day:

Did you know that cystic fibrosis is the third most common reason for lung transplants in the US? It's behind Idiopathic Pulmonary Fibrosis and Emphysema, respectively. IPF just recently (sometime in the past few years) beat out Emphysema for the #1 slot. About 1600 lung transplants were performed last year in the US.

Okay, I don't know about you, but that makes me pretty excited. Don't get me wrong, I'd prefer NO ONE ever needed a lung transplant, obviously. But consider that the first successful double lung transplant wasn't even performed until 1986, and the first successful CF lung transplant wasn't until 1988. That means that in just about 20 years we've taken this medical technology from a whimsical pipedream to a medical reality for over 1,000 patients a year suffering from end-stage pulmonary disease. Um, wow.

And beyond just the "wow factor" there's also the "someday soon" factor -- as in, maybe someday soon they'll be able to "grow" lungs to perfectly match your body using your own stem cells and DNA. Or maybe someday soon they'll be able to combine bone marrow and lung transplants to successfully wean patients off of immuno-surpressive therapy post-transplant (a reality already for certain kidney and liver transplants). Not to mention new therapies in the works for lung transplant treatment such as inhaled cyclosporin, a nebulized version of a key immuno-surpression drug that allows the medicine to go straight to the source, bypassing other organs where its affect is not needed.

I do believe that it's entirely possible to imagine a world where CF is no longer the third most common cause for lung transplants -- as CF therapies grow and reach new heights that day seems closer and closer. In the meantime, however, I can't tell you how excited these new developments in "transplantland" make me. Honestly if I'd known medical science was this interesting, I might not have been an English major (freshman year biology grade notwithstanding, of course).

3) Speaking of transplant, please keep your hearts and minds open for a lovely and inspirational young woman with CF named Emily Haager. This surfer cyster/ambassador for the CFF has lived her life encouraging CFers to be active, hopeful, and happy, and she has now been in the ICU for over a month after a sudden and unexpected health issue. She is currently on the vent and hoping to recover enough to receive a lung and kidney transplant soon, but her family is requesting that all of her beloved CF community join them in prayer for this remarkable woman. If you are not already aware of her story, please visit her blog or her carepage.

And that's it. For those of you interested: I stopped IVs this past Friday and have been LOVING the beautiful NY spring ever since. Is it a coincidence that I feel better just as the temp hits 60? Um, I think not! And my recent walks down to the Statue of Liberty/Battery Park with my puppy prove the point.

Happy spring, beautiful people.

Positive Charge: Blogger Challenge

Okay, so apparently once I get on a roll I don't like to stop. I'm feeling good (well, feeling better) and it's translating into a sort of...blogtasticness? Um, yeah, anyway. You'll have to forgive if these posts are maybe a bit more random than usual. There's just so much bouncing around in my head right now, and I feel like it's as good as any a time to get it all out there. So with all that said, I have a new topic and I would totally like your input, sweet readers:

What does "positivity" mean to you in the context of CF, or life in general?

I feel like "positive attitude," "positivity," and other words get thrown around a lot by really amazing and well-meaning people, but I'm not sure everyone's version of what it means to be "be positive" is really the same. I mean, I highly doubt many people see themselves as having a "negative attitude" for example -- they may see themselves as being "realistic" or even "honest," and in turn they may think that others are unduly cheerful or even "in denial." And I guess this all got me thinking, because is one person's positive thinking another person's denial? Or is my realism your negativity?

And even more vexing, is our "hope" or "positivity" threatened by stories that don't fit into our paradigm? Or is our sense of self and worth degraded when others do better than we have with the same disease?

Honestly, I'm not trying to start a turf war here. I'm asking these questions because they seem to come up more often than I might expect, and now that I've hit transplant stage it's like they're screaming at me from the page, whether I like it or not. To use an example of two blogs I very much admire by two women who inspire me daily but who are dealing with two VERY different cases of CF: where does "I have CF, So What?" end and "Not so Bright and Shiny" begin? Because each of these are very real, honest, and open depictions of cystic fibrosis, and I don't think anyone in their right mind could argue with the notion that both of these women embrace life and live it to the fullest with grace, wisdom, and style. And more than that, they're both working very hard to stay positive in the face of some pretty daunting obstacles -- but do their versions of "positivity" differ, to some degree? Well, maybe. Probably.

To put this in a personal context, I have to admit that I often feel the need to "champion" the transplant CF community (which is, of course, not to say that I am the best or even an adequate representative for my fellow cystics in waiting -- it's just that I happen to be involved in a lot of discussions and therefore have the chance to speak up). I want people to understand that transplant is an option, that it's not the end of the world, that it's okay if you get sick and you're honestly doing the best you can, that there's no guilt in having cystic fibrosis or being overwhelmed once in a while. And more than that I want to emphasize that there is no one approach to CF -- I have known so many people who blow me away with their own unique brand of grace and strength in the face of this disease, having nothing to do with lung function or life expectancy or whatever other number you might be tempted to zoom in on. And when I first was told that I needed a transplant, I quite frankly considered it my mission to let everyone know that sometimes, darn it, you just need new lungs.

Fast forward almost two years from my initial meeting with the transplant team (sidenote: holy WOW, are you kidding me?? TWO YEARS??): not a whole lot has changed except that 1) I'm now actively listed for transplant, and 2) I've toned it down a bit. And, no, the latter is not because I no longer believe that people should know more about transplant and that transplanted CFers should be visible inside the community. It's more because I've become aware that it's not my job to force my view of CF on other people. Because if I'm really, totally, brutally honest I have to admit that my speaking up was largely for me -- I wanted people to know that I was trying, was living, was exercising and doing treatments, and still needed a transplant. And yet, somehow, as I've become a little more secure in both my disease progression and my own role in managing my CF, I've felt less and less need to justify my position (although obviously the impulse isn't totally dead, as proved by this blog). So now -- while I still find myself asserting transplant as a possibility, and a positive step for people with severe CF -- I also like to think I've mellowed out to the point where I can read statements like "you CAN control this disease" and not feel somehow attacked. I realize the person is saying that there are things you can do to improve your chances, and my response has moved from "must. assert. self." to more of a "here's to trying!"

But it's still confusing sometimes. How do we, as a community, strike a balance between honoring all CFers in their fights against this disease without judgment and encouraging people to believe they can actually have an impact when it comes to their personal health? Where is that line between guilt and empowerment? How do we showcase hope without pushing the sickest among us (those who need support more than ever) to the sidelines? And, to get back to the original train of thought for this post, where does denial end and healthy positivity begin?

Can we get to a point where we can say "yes, I got off the transplant list and I'm darn proud, but I understand that others might not, and that doesn't mean they're doing something wrong"? Can we honestly shrug our shoulders and say "hey, I need a transplant and I know in my heart that I did the best I could, but that doesn't mean I don't admire the other guy who managed to get off the list"?

And since we're all in this together against a disease that seems to attack each one of us differently, is there a way to reconcile our individual stories with respect and acknowledgment for the stories of others, even when they seem to contradict our own experience?

Well, obviously I don't have the answer, which means it's time to pass the buck. And of course I thought I'd put it to you guys, since you're basically the best wealth of information any girl could ever ask for. Post your thoughts here in the comments or write your own blog and let us know where we can find it. In other words:

Let's get real.
Let's be honest.
Let's start a conversation.
And, of course, let's be positive.

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!