If all goes as planned, I will be 47 years old as you are reading this.  It never ceases to amaze me, as I pass another birthday, that I am not only still here and still kicking, but that I actually still kick pretty darn hard!  So hard, in fact, that now I’m beginning to deal with issues related to “normal” aging.  My wrinkles are getting wrinkles, I don’t even try to read anything without reading glasses, I often forget why I have arrived into any given room of my house, and NOW, of all things, my feet hurt.  I think I actually am getting arthritis in my FEET.  Granted, this year has been a pretty grueling one for my feet.  First was the half-marathon with its accompanying months of training, followed much too closely by the 199-mile team Relay race, during which I ran something like 18 miles over the course of around 24 hours.

This is why I have taken up swimming.  Now you must understand that swimming is NOT my sport.  First, I sink.  If that isn’t enough, I generally feel as if I am about to drown any time the water is deeper than waist level.  Finally, I HATE to be cold, and I am always cold in water, even in hot tubs. This is how much my feet hurt.

The good news (and this is where this extremely long prologue relates to today’s topic) is that lately, over the course of many, many, repetitive, over and over, recurring, cyclical laps in the pool, I have noticed something extremely interesting about my breathing.  Not only that, but this little factoid I’ve discovered applies to other activities like walking, doing yoga, eating, reading, sleeping…everything I do.

What is it, you ask?  What could it be?

First, I want to warn you that this will sound simple.  Ridiculous even.  Some of you will simply say, “duh,” and want to turn the page.  Don’t please…just give me a chance. 

Ok.  Here goes.  I don’t breathe, that is, not in an active, verb-like kind of way.  Breathing just happens to me.  I am “breathed,” if you will.  I really have no say in the matter, unless I am trying to hold my breath or something.  Even then, I am just postponing the inevitable.   Breathing soon happens again.  To a certain extent, I can slow down the rate of my breathing, but that’s about it.  If I exercise, it happens faster, and deeper, despite my efforts to control it.  If I am afraid, my breath is fast and shallow.  When I meditate, it slows way down…without my thinking about it.  My body knows exactly what it needs from the air around me, and it breathes as hard and fast it needs to in order to achieve its goal.  This is what swimming has taught me.

Why swimming?  I don’t know.  Perhaps because it is such a rhythmic activity, like breathing.  Maybe because it is so incredibly boring, there is nothing to do but notice things like how breathing works.  Whatever the reason, I am grateful to swimming because when I approach breathing with the knowledge that it’s going to happen as it needs to, until it doesn’t anymore, I can breathe easy (pun intended).

Do you get anxious when you feel short of breath?  Of course you do…who wouldn’t?  Here’s the kicker:  being anxious and fearful causes breathing to be rapid and shallow, which doesn’t do much for the feeling of air-hunger.  In fact, it makes it worse.  What if you could simply sit down (if you’re not already), and know and trust that your body knows what to do. Then, watch it work its wonders.  As you let go of the fear and tension, you relax and allow the breath to come and go, as it needs to.

Here’s how I learned that this works.  My schnauzer, Wiley (who is built a bit like a small horse), and I like to play this game on our walks.  It’s called “Get the Tree, or Pole, or Bush, or whatever.”  He picks the target.  For me, it’s a form of interval training.  For him, it’s the honing of his hunter instinct.  To get the full flavor of this activity, you must understand that Wiley was leash trained by my son, who regularly harnesses him up, and at his command, “Run like the wind!” has the poor dog PULL him around the neighborhood on his skateboard.  Don’t worry; everyone involved must wear a helmet.

So, in “Get the Tree or whatever…” Wiley picks a target about 100 yards ahead of us, I yell, “Run like the wind!” and off we go.  I HAVE to sprint.  There is no choice.  When we get there, I rein him in and we walk until I can breathe again, then we do it all over again and again…

The other day Wiley and I were on a walk, and I was trying to figure out how to put into words my epiphany about breathing.  It wasn’t working for me, so I decided it was time to play.  I yelled, we took off, and about halfway there, the target (dare I say “benchmark”) changed!  Suddenly, it (a cat) was behind us…and I took a flying leap to avoid Wiley as he charged in the opposite direction.  When it was all over, I was out of breath for SO many different reasons!  I was short of breath from running, of course.   I also sort of had the “wind” knocked out of me, AND I was laughing so hard that I was crying.  So there I was, lying on the ground, unable to breathe.  I have NO idea why the thought came to me, but I decided to relax, and watch my body recover its breath.  Really.  It worked!  Now, I’m sure I would have started to breathe again had I NOT had the idea to try my experiment, but it wouldn’t have been quite as fun…or interesting.

I’ve been a meditator off and on for decades now, trying different techniques from mindfulness, to Holosync technology, to repeating mantras or even guided imagery.  One of my LEAST favorite meditation instructions (in fact, one I find downright annoying) is to “watch my breath”.  I don’t enjoy watching my breath.  It seems that whenever I do, I feel tight or start coughing.  It is not a peaceful experience.  So I am NOT advising, “watching” your breath.  It is a subtle difference, but a very big one, to instead watch how your body allows breathing to happen the way it needs to happen, in any given moment.
 
So here is my “coaching” suggestion regarding breathing:  allow it.  That’s all!  Allow it to happen, and practice becoming very curious about how it all works…no matter what you do.   Just get out of breathing’s way, and let it do its work.

Here are some questions to explore regarding breathing over the next three months:

1)    What happens to your breathing when you are tense?  Angry?  Fearful?
2)    What happens to it when you are happy and calm, listening to music, laughing with friends?  What about right when you are falling asleep?
3)    How does your breathing accommodate a coughing fit?  I know it feels like you aren’t getting enough air when it is happening…but then what happens when you finally stop coughing?
4)    Go out for a walk, and watch how your breathing changes as you change pace, and as you change elevation.  How does it work?

Be curious.  Don’t try to change or control your breath in any way.  And whatever you do, don’t focus on the breathing itself.  Focus on how your body allows the breathing to occur.  Focus on how your changing emotions or activities can so hugely impact the way your body is “breathed”.

The next dimension we will explore will be “sensing”.  Who knew that your ability to use all of your senses effectively has so much impact on your overall wellness? 

I’ve had the hardest time ending this article.  It’s been sitting on my desk for days, waiting for me to wrap it up and send it off, but I guess this is what writer’s block is all about.  So I was telling this to my 8-year-old son, Griffin, who gave me some great advice.  “It’s like a hamburger, Mommy,” he said.  “First is the top of the bun, when you say what you are going to say…then the burger is what you have to say…then the end is just the other half of the bun!  Like…. and this is what I did on my summer vacation.”

So, this is what I did on my summer vacation.

A NEW MINORITY
By Julie Desch, M.D.

As a brown (and gray) haired, blue-eyed white girl from the heartland, I don’t really belong to a minority to write about.  So instead, I’ve decided to propose that as health-conscious adults with CF, we should form our OWN minority!  Ours will be the small (but growing) group of people who understand and embrace the importance of “Wellspan” over “Lifespan.”

As members of this minority, our goal is to make “Wellspan” (the number of years we are able to do what we want, when we want, joyfully, and look forward to each new day) divided by “lifespan” (the number of years alive) as close to the number “1” as possible.  In medical speak, we call this concept “compression” of morbidity, where “morbidity” refers to that period of time in your life where all hell breaks loose, medically speaking. One bad thing leads to another, requiring increasing dependence on our healthcare system, until you eventually die.  So “compressing” this “morbidity” means to go, go, go happily until you can’t anymore, and then to die quickly (preferably while sleeping peacefully, or perhaps choking on cheesecake). 

Everyone wants that, right?  Here is why we will be in a minority, though.  MOST people think what is important is extending life as much as possible.  Longevity is king, and staying “young” means living longer.  These are the people buying the “anti-aging” books, miracle herbs, and skin products.  The underlying belief is that if the body stays “young”, it won’t die, so I (the person inside this body) can keep overworking, overeating, under-exercising and driving my BMW into infinity.  Meanwhile, of course, my body is a wreck, I’m too busy to notice much of anything, I can’t sleep at night, I have few friends, and the highlight of my day is Happy Hour.  Fortunately (?), I get to enjoy this life for a VERY long time…without wrinkles.

We know better.  With the whole “longevity” thing off the table, we can focus on making our Wellspan as long as our Lifespan.  We will make “compression of morbidity” our credo.

I know what you are thinking.  Looking objectively at the life of someone with CF, with treatments, and antibiotics, and enzymes, and sinus surgeries, hospitalizations, transplantations, etc.,  “compression of morbidity” is not what first pops into the mind.

I say “objective, schmobjective!”  With a ‘Wellspan” perspective, the only thing that matters is our SUBJECTIVE experience.  If we focus on making our subjective experience of living with CF less ‘morbid”, we control our own “compression of morbidity”, and our Wellspan/ Lifespan quotient approaches unity.

Huh?

I maintain that if we make as a goal to improve at least ONE aspect of our wellness every day, wellness is at the front of our minds, not illness.  Our subjective experience of life with CF then becomes one of “I’m in charge” here, not the disease.  This makes that day a “Wellspan” day, regardless of what else happens.

To give you some ideas of areas of your wellness to work on, I’ve decided to write a series of articles in the next several issues of the Roundtable, with each article covering one dimension of wellness.  There are many, many schools of thought out there about what constitutes wellness, and almost as many models of wellness systems.  The model that I will use in this series of articles was pioneered by Dr. John Travis way back in the 1970’s.  We are all energy transformers,” says Dr. Travis, “connected with the whole universe. All our life processes, including illness, depend upon how we manage energy.” The Wellness Energy System represents the energy inputs and energy outputs of a human being - a whole-person approach to wellness.  There are 12 dimensions of wellness in this model, and they formed the basis of the pioneering assessment program, The Wellness Inventory, which Travis first created as an intake for his new Wellness Center in 1975. The Wellness Inventory was the first wellness assessment ever created.  I recently completed a coaching certification course allowing me to use this very powerful tool in my coaching.

Travis’s Energy System model looks like a wheel, with each of the 12 Dimensions forming an equal portion of the whole.  The concept is that each Dimension is of equal importance to the whole, and that if a person does very well in some aspects of wellness, but neglects others, they are in for a very BUMPY ride!

We want a smooth, well balanced ride through life, and the way to accomplish this is to balance out our wheel…to pay attention to ALL of the very important dimensions of wellness, including:  Self-Responsibility and Self-Love, breathing, sensing, eating, moving, thinking, feeling, playing & working, communicating, intimacy, finding meaning and transcending.

We begin this series, with a discussion of the first and most important of the dimensions, self-responsibility and self-love.

Self-responsibility and self-love is not really just a segment of the wheel.  Instead, think of this dimension as the tire encompassing the whole wheel.  Alternately, if we think of the 12 wellness dimensions as pieces of a pie, self-responsibility and self-love is the CRUST of the pie.  Very important!  Fortunately for us, having CF gives us a readily available place to begin to work on this dimension.
 
One very important aspect of self-love and self-acceptance is allowing disease to be an instructive and positive life force.  The lessons that accompany it are essential to the fully aware human being. Since we are all going to die anyway, the test seems to be how we deal with our illnesses rather than how well or how long we can avoid them.

No matter what your current state of health, you can begin NOW to appreciate yourself as a growing, evolving human being, and allow yourself to move, with love and compassion, toward a happier life and more positive state of health.

As your self-love and acceptance grow, it becomes easier to accept full responsibility (‘ability to respond’) for your life.  The tendency to fill the ‘victim’ role diminishes.  You assume a more active role in your health care.  You realize that you, and ONLY you, are in charge of how you respond to your challenges.  This is a GOOD thing.  It is an empowering revelation!  It makes every day a Wellspan day.

So, for the next three months, think about how you might improve this dimension in your life.  Three months is the PERFECT amount of time to cement some new, positive habits into your lifestyle.  To help you get started, think about a previous life goal that you have successfully accomplished.  How did self-responsibility (ability to respond), coupled with self-love, contribute to the completion of that goal?  Really stretch your thinking here, and write down what you come up with.

Now, think of one presently unfulfilled small and manageable goal. Apply the same self-responsible, self-compassionate methods that worked previously to tackle this new goal.   I think you will find that what once may have seemed daunting becomes much easier to do with this new and growing compassionate flexibility.  You may even want to try more than one small goal  (remember, I’m not talking marathons here). 

I’m happy to help with any stage of this process, whether it is finding a goal, or figuring out how to add self-love and self-responsibility to your action plan.  Just send me an email.  I also love feedback.  It’s fun to meet others out there on the Wellspan path.

Next time, we will talk about the first of the three dimensions dealing with taking energy in…breathing.  Now THAT will be a challenge!

LIMITATIONS:  OR ARE THEY?

By Julie Desch, M.D.


I experienced hemoptysis this last week, and as I sit to write this article now, it is forefront in my mind.  Any “normal” person would look at the experience of coughing up blood and say, “yep…that sure seems like a limitation to me”.  I know I did the first couple of times.  The first time, I was at 8000 ft, on the first night of a planned 4-day ski trip.  We had just unpacked the car, and were starting to make dinner when I felt this weird fluttering in my chest and suddenly had to cough.  I looked down and there was blood on my clothes.  It’s hard to describe the sensation in my gut as I went to the bathroom and figured out that I did NOT have a nosebleed, but that it was coming out of my lungs. It was as if all my internal organs suddenly dropped into my pelvis and a cold sweat  broke out immediately.  FEAR reared its ugly head.  We left, of course….that very night…and came back home.  I distinctly remember the content of my thinking that night driving home.  The first one was rather melodramatic, “Oh my God, I don’t want to die yet!”  And another, “I’ll never be able to ski again!”  Or, “It’s going to be all downhill from here (no pun intended)…I wonder if I can still exercise at all?”

The first thing I did when I got home was absolutely crazy…and it was a direct result of my crazy thinking.  I immediately got onto my treadmill and RAN.  I had to prove to myself that I wasn’t dying.  Now, of course, I know that that was the absolute REVERSE of what I should have done.  But I was coming completely unhinged, all as a result of being quite solidly in fear mode. 

As it turns out, I’ve been doing a lot of reading (and thinking) about thinking lately.  It’s amazing, really, how much power our thoughts have over our lives.  What is a thought, in reality?  A thought is a story or judgment we make about something we perceive (or want to perceive…or have perceived), and it is simply a result of chemical reactions between neurons in our brains.  Nothing else.  A thought may in fact be true  (This is blood, and it came from my lung).  But it may not necessarily be true, yet we believe it anyway (this is a really bad sign, and I probably will never be able to exercise again).

Whether or not what we perceive is true doesn’t matter, according to Dr. Bruce Lipton, who quite eloquently describes the power of belief in his new book, “The Biology of Belief:  Unleashing the Power of Consciousness, Matter, and Miracles.”  Lipton is a cell biologist who came to Stanford to research endothelial cells, after teaching cell biology to medical students at the University of Wisconsin Medical School.  His research, in a nutshell, suggests that human cells (all 50 trillion or so of them) are not, in fact, controlled by their genes and DNA, but by signals from the outside of the cell, including messages consisting solely of energy which emanate from our thoughts, be they positive or negative, true or false.

It’s impossible to sum up the content of this very intriguing book in a short article, but essentially, his message is that the “brain” of the cell is NOT the nucleus, nor the DNA it contains.  Instead, DNA is nothing really but a blueprint for the formation of proteins needed by that cell.  Further, genes cannot and do not turn themselves on or off.  Instead, that job is done at the end of a complicated process that is initiated at the cell membrane, the outer covering or “skin” of the cell.  There, messages from the environment (hormones, chemicals, photons of light, or other forms of energy) are transduced by proteins embedded within the membrane, into behaviors by the cell.  These membrane proteins are the real “brain” of the cell (perhaps it should be termed a mem'brain').  They “perceive” the environment and react accordingly.

Lipton’s metaphorical leap is that the cell is a tiny little replica of the human body.  We have a brain that perceives, and this perception leads to behaviors…the cell has the cell membrane, in which reside integral membrane proteins, which perceive the environment and begin a cascade of energy transformations that lead to cell “behavior”.  We have organ systems of respiration, digestion, movement and structure, excretion, circulation and reproduction, to name a few.  So does the human cell…in teeny-tiny miniature versions. 

Ok, so my inner pathology nerd is revealing itself, but hang with me for a few more paragraphs.  Here is where it gets interesting, even if you hate biology.  It is a known fact that cells, groups of cells (organs and organ systems), and really huge conglomerations of cells comprising the human body can be in one of two modes.  A cell/organ/human can be in growth mode (also known as learning mode or LOVE mode) OR it/they/he/she can be in contraction mode (also known as protection mode or FEAR mode).  And here is the intriguing part…A cell/organ/person cannot be in both love and fear, growth and contraction, learning and protecting modes AT THE SAME TIME!   An example is a cell in a Petri dish exposed to either a toxin or to nutrients.  In the case of the environmental toxin, the cell retreats.  It stops all of its unnecessary metabolism, digestion, reproduction and excretion and GETS OUT OF DODGE!   It is in protection mode and cannot go back to growth mode until it is safe.

The opposite is true in the Petri dish with nutrients in the environment.  In this case, the cell is happy.  It moves toward the food and all of its metabolic functions hum along.  It grows.  It eats.  It divides.  It loves life as only a cell can.

Now look at the human who sees the mountain lion on the hiking trail.  Instantly, blood flow is shunted toward the only places that matter-- the extremities, and the areas in the hindbrain that control reflexes.  He or she unconsciously stops all unnecessary activities like digestion and thinking about philosophy.  Fight or flight hormones rage through the body and it fights (bad idea) or flees (also not a great idea in this scenario).  Later that night safe at home, normal functions of growth and learning and loving can resume.

The human who isn’t perceiving negative thoughts, who isn’t  afraid, and who isn’t trying to protect the status quo, but is open to learning is just like that happy cell swimming towards its food.

So, what in the world does this have to do with limitations, you ask?  Eckhart Tolle says that a limitation is nothing more than “resisting what is”.  In other words, it is the thought about what is happening, NOT what is actually happening, that is the limitation.  How can that be true?  I hear you.  “But, I have CF. Clearly, that is a limitation!  I spend HOURS every day taking care of myself and that limits what I can do for a living, who I am friends with, my relationships, whether or not I can have kids, what I can eat…. There is BLOOD in my sputum, for God’s sake!”  It can really go on and on. 

The same would be true for someone who has heart disease, or MS, or diabetes, or cancer, or debilitating arthritis, or  ______ (fill in the blank). The “limitations” would be different for each, of course.  Or someone who thinks they are too fat, too ugly, too poor, or too stupid to have a good life would most certainly say they are “limited” in life.

Tying this into the cell biology of growth vs. protection is the key here.  If my thinking about my hemoptysis puts me into fear mode, I am programming all of my cells to be in fear mode.  They can’t do anything else.  Resisting the fact that I am coughing up blood leads to stress about what is…blood…That’s all.  Not impending doom.  Not some future need for a respirator.  Not exsanguinations in the middle of Safeway.  Just blood.

What would happen if I didn’t resist, or have any story about what the blood meant?  What if it were just… blood?  Whoa. Stress wouldn’t exist.  My cells could stay in growth mode. I could stay in love and learning mode.  Maybe, while in learning mode, it would be ok to take a few days off and not hop immediately onto the treadmill.

I really don’t mean to belittle or negate the fear that can accompany a very serious disease such as ours.  It can be scary to be reminded, constantly, that we are all (being human) slowly dying, some of us quicker than others.  Fear of death and of loss of control is very real, and can’t just be “turned off” by deciding to think happy thoughts. But maybe, next time you catch yourself in fear mode, you can ask yourself, “What am I thinking right now?”  Do I need to think this?  What am I really afraid of?”  If you can be open to learning something from the fear, you may find yourself in learning mode.

I’d like to end with a quote from Genpo Roshi, a Zen monk, who says, “When we allow everything to just be, it all functions perfectly, exactly the way we want because we give up wanting it to be any other way. The trick is to let go of wanting. When we give up our preconceptions of where the snow should fall and let it fall where it falls, then there is no question about what to do. Grab a shovel”.

Or, in my case, a Kleenex.

EAT, DRINK AND BE WELL

I’ve been procrastinating writing this article, and after some soul searching about this, I realize it is because nutrition is one area that, frankly, I haven’t done so well at.  So I have changed the task of writing this as a “wellness expert” to one of being a great example of how life is a continuous lesson in humility.  The good news is after doing the due diligence for this article, I think I’m now on the right path. So what if I’m 40 years late?  I only wish I would of known this stuff sooner.  I might have beat out Lynn Miller at center on my high school basketball team…

Here was my scenario:  I had stomachaches as a kid…every day.  I was embarrassed to go to friends’ houses if I hadn’t already…shall we say…“purged”.  Overnights were torture. Of course my parents tried to get me to take enzymes, and occasionally I would, but I hated them.  Instead, for some reason, I tolerated the pain and embarrassment.  Then I got ‘smart’.  I figured out that if I didn’t eat much fat, I had fairly normal bowel habits.  For years, I’ve deluded myself into thinking that I was “pancreatic sufficient”, as I’ve existed on almost Pritikin levels (read “almost none”) of fat intake.  This correlated nicely with the stage of my life where I really cared about being perceived as “lean”.  It was stylish.  All my friends were jealous that I had this sort of “natural” bulimia where, if I ate too much, all I had to do was wait until the morning, when it would all go down the drain, so to speak.  Then at Nordstrom a year ago, a sales lady looked at me and, completely serious, suggested I “eat a cookie or something”.  At this point, I knew it had gone too far.  But, then at age 44, I wasn’t too sure what to do differently, except admit to myself that it was time to gain weight.

This last weekend added even more evidence that I have been on the wrong path.  I heard Dr. Carlos Milla, from the Minnesota CF Center, speak at the Stanford CF Education Day about the role nutrition plays in lung health.  It was an excellent thought provoking talk about the huge effect malnutrition has on both developing CF lungs and on ongoing lung health.  The timing of this talk was perfect for me, as were the emails I received just last week from my friend, Penny Stroud, regarding the CF Foundation Clinical Practice Group Ad hoc Working Group of the Subcommittee Growth and Nutrition—New Analysis for Weight and Stature Assessment and Classification in CF Care (who comes up with these names?).  The bottom line from this committee for adults is “The CFF recommends that we all utilize the BMI (body mass index) percentile method, and that females should maintain a BMI of 22 or above, and males, 23 and above”.  BMI is calculated as the Weight (Kg) / Height (meters) squared.  There are several BMI calculators on the web—just google BMI. 

So, where are you?  I’m a 19.  I have a ways to go.  The following describes first, the evidence that I’ve learned telling me I need to get to 22, and second, some of the weight gain techniques I have gleaned from others who are much better at this than I have been.




WHY DO WE CARE?

There are many reasons it is easy for a person with CF to become malnourished.  To name a few:  1) pancreatic insufficiency leading to malabsorption of nutrients, 2) increased caloric needs, 3) inadequate intake of calories, 4) decreased appetite (especially when ill), and 5) glucose intolerance or CFRD.  The result of these challenges leads to both decreases in fat mass and muscle mass.  Fat mass loss means less energy stores, and protein mass loss means decreased strength (very worrisome when this concerns muscles of respiration) and decreased protein stores necessary for much of the body’s metabolism

Can’t we all just be lean?  Not if we want to maintain optimal wellness with CF!  We know that the main determinant of our survival is the status of our lungs.  We also know that many factors are at play in regard to how healthy our lungs are.  It turns out that a very important factor is nutritional status.  The study I wish I had paid attention to was back in 1988, when differences in approaches to nutrition between two CF centers (Boston and Toronto) demonstrated clear differences in survival despite the fact that pulmonary function values were similar in the two groups.  It turned out that the Toronto patients had better nutritional status and better survival with their approach of “eat lots of fat, and take a lot of enzymes”.  The Boston clinic had the Julie Desch approach of restricting fat (they probably didn’t call it that) with fewer enzymes.  Not surprisingly, the Boston folks had a much poorer nutritional status, but in addition, they didn’t live as long. 

Another very interesting study from Germany demonstrated that malnourished CF patients had much worse lung function values than adequately nourished patients, and surprisingly, this was INDEPENDENT of the presence of Pseudomonas aeruginosa.  This difference became greater as the patients got older.  In other words, if you stay well nourished, even if you do have nasty bugs, you will do better than if you are below your ideal BMI.


WEIGHT GAIN OR MAINTENANCE

Convinced?  OK, so if you’re like me, and need to gain weight, read on.  If you are at a decent BMI, read on as well, because chances are there are or will be times when it is difficult to maintain your weight due to the factors above.

As many of you know, my solution for almost everything is exercise.  In this case, you may think that expending calories on exercise would be ill advised when trying to maintain or gain weight.  As it turns out, this is not true.  Exercise, especially resistance exercise, builds muscle mass.  This is good.  Not exercising leads to muscle wasting.  This is not good.  Remember, muscle mass determines strength (think breathing and coughing) and protein stores for a myriad of body functions.  I’m sure you have all heard that muscle weighs more than fat.  It turns out that when you start lifting weights, you will actually gain weight (as long as you eat enough calories and are absorbing well).  So, trick number one is LIFT WEIGHTS. 

Next, breakfast is essential and should be eaten immediately upon awakening (the name breakfast comes from the idea of “breaking the fast” that occurred while you slept).  Even if the LAST thing you want to do when you get out of bed is eat (I know the feeling), put something in your stomach. An Instant Breakfast or Scandishake goes down pretty easily…you don’t even need to chew and it’s fast if you are in a hurry. 

Not only is breakfast important, so are lunch and dinner, and, it turns out, so are those mid-morning, mid-afternoon and bedtime snacks.  Eating smaller amounts more frequently (every 2-3 hours) is really what our bodies need to function best.  When this occurs, blood glucose levels are sustained at a more steady state and not spiking and diving as they do after eating huge meals and then fasting for hours.  Also, several small meals lead to less of a “full” feeling, which can worsen shortness of breath.  You can’t eat Twinkies, though.  Each meal or snack needs to have a balance of protein, healthy fat and carbohydrate.  This leads to nice, slow and steady absorption and insulin release.   

Increase fat intake.  This used to mean any fat, but in my opinion, it would be wise to weigh heavily on the “healthy” fats, monounsaturated fat such is found in olive, peanut and canola oils, and polyunsaturated fats.  The two most important types of polyunsaturated fats are omega 3 and omega 6 fats because they are essential fats (you must eat them because the body cannot make them).  Omega 3 fats are especially important to eat in abundance because they tend to have “anti-inflammatory” effects.  Foods rich in omega 3 fats include fish, flaxseeds, walnuts, and canola and soybean oil.  “Normal” humans are encouraged to reduce saturated fat (found in meat and animal fat, dairy products and a few vegetable oils like palm and coconut), mainly to avoid heart disease due to coronary artery atherosclerosis.  As risks go, this is a very small one for the CF population, so I say, “let them eat cheese…and butter, and beef, and ice cream, etc.”  Just take your enzymes!  The last type of fat is the “trans-fat”.  These are bad…even for us as they tend to be “pro-inflammatory”, and I think they should be limited.  Fortunately, all foods must now be labeled with the amount of trans fats (aka “partially hydrogenated”) they contain.

Eat even when you don’t feel like it.  Here is where I solicited ideas from other adults with CF, since I have work to do in this area.
1) nutritional supplements-  guzzle them so as to not taste the bad flavor—find someone to have a contest with (your kid, a friend)
2) mega milk shakes w/ nutritional supplements and banana, ice cream, yogurt, chocolate syrup, oil, egg etc. to make it high calorie.  Add juice or milk to make it watery.
3) exercise always increases appetite
4) high calorie additions to light foods like fruit and veggies (dips, peanut butter, etc.)
5) when feeling short of breath (SOB), try “wet” foods those with sauces, soups, gravy etc. so it feels “slippery” going down. Dry foods are less pleasant when your mouth is dry from breathing so hard.  Chewing can also add to feeling short of breath.
6) You may tend to drink a lot of water from being SOB but it is important not to drink too much before or during a meal or you may fill up too soon.
7) Always have high calorie, dense snacks in the car or purse for munching- even when you don't feel like it  (i.e. powerbars, nutrition bars, chocolate, nuts, beef jerky).
8)  When not feeling hungry, try to make food look pretty with colorful dishes and veggies just to make it more esthetically pleasing.  Use large colorful plates and garnishes.
9) Make very large portions and keep them for leftovers. 
10) Make sure to have favorite foods in the home as a special treat for when you are not feeling well.
11) Appetite stimulants such as Megase or marijuana brownies have helped some people.
12) Keeping your system “flushed”…i.e. avoid constipation as that can really zap the appetite.  Try stool softeners or Miralax to keep the gut moving.  Also, drink plenty of water!
13) This is my contribution.  If you don’t really like to cook, invite someone over who does.  Make it a weekly event…they bring the food and you provide the wine (or whatever) and entertainment (i.e. the television to view a favorite weekly show on).  If they like you, they’ll leave the leftovers!
 
Finally, never write at a computer while nubulizing hypertonic saline.  FYI.

IT’S ALL ABOUT THE COTTON


Several years ago I was at a quarterly check-up and was being asked the usual questions.  What medications do I take?  Am I doing my treatments? Am I doing my exercises?  How often do I eat?  How often do I...?  You know the drill.

I was doing pretty well, answering in a way that made everyone happy, when the dreaded, “Are you taking your ADEK’s?” was asked.  I shamefully explained that no, I was not exactly “taking” them, but I did HAVE several bottles of the vitamin supplement.  I just hadn’t actually opened one yet.  My doctor looked knowingly at me and said, “It’s that cotton, isn’t it?”  The strange thing is…he was right!  There is a certain activation energy required beginning doing something you know you should do, and that stupid cotton at the top of a bottle of pills metaphorically represents that activation energy perfectly.

That is why for this article, I have decided to look at “wellness” as that elusive collection of pills beneath that annoying cotton.  Notice I don’t say “that pill”.  It’s not one thing, or it would be easy.  It is many things!  Things that we do, that we don’t do, that we think or feel, that we believe, that are important to us, that we let go of…Many things.  And the pill bottle is never emptied.  It’s not like a two-week course of Cipro.  It is perpetually refilling. It’s a lifetime course of…well, healthy life.

First, how do we define “wellness,” i.e. what are we supposed to be “taking” daily anyway?  It’s odd really, but although there are countless volumes defining and giving diagnostic criteria for thousands of “illnesses,” there is no standardized definition of wellness.  Certainly “wellness” is NOT the absence of “illness.”  I can think of many, many people who have no physical or mental illness, but are not poster children for wellness, by far.  They may smoke, eat nothing but cheesecake, or in some other way not take care of themselves, or they may be terribly angry or fearful, or lonely…I’m sure you can think of a few folks you know who fit this bill.  Similarly, I know many people with severe health problems who are doing everything in their power to maintain or improve their health, have fabulous support systems in place, have great attitudes about their lives, who contribute endlessly to this world, and frankly EXUDE well-being.

The best definition I’ve come across for the word “wellness” is the following: “the integration of body, mind, and spirit--the appreciation that everything you do, and think, and feel, and believe has an impact on your state of health and the health of the world.”


That really opens up our options and abilities to improve wellness, doesn’t it?  You can have CF and be your community’s model of wellness!  If that sounds like a pill you want to swallow, where do you start?

First, in order to reach a destination, you need to be completely aware of where you are right now.  What side of the “cotton” are you on, if you will, in the various ways you and your body take in and expend energy?  That really describes what the human body does, basically.  It is an energy-transforming machine.  We take in energy in the form of what we eat or drink, the air we breathe, and the sensory input we receive.  Then we expend energy.  We expend it in ways we don’t control (maintaining body temperature, cell renewal, infection fighting) and in MANY ways that we DO control.  To name a few:  how we move, how we think, how we feel, how we work or play, how we communicate and relate to others…the list goes on.  The trick to optimal wellness then is to optimize and balance both the intake and the output of these energies.

There is a fabulous model of this system in a book by Dr. John Travis and Regina Williams entitled “The Wellness Workbook.”  In the book and online via a link on my website (www.newdaywell.org), you can take an extensive questionnaire exploring the various dimensions of this model of wellness to get an idea of where you currently stand, and where you may be ready to improve.  The online questionnaire takes about an hour to complete, and then is automatically scored to show a “wellness” score (how you are currently doing in twelve dimensions of wellness), and a “satisfaction” score  (how happy you are with your current practices).   The areas where you score the lowest in “satisfaction” are the areas where you are most ready to change.  Then you come up with a plan to attack those areas where you truly want a better score.  This evaluation process and wellness plan construction is the equivalent of taking out that cotton!  You can do it on your own (taking the test costs $40, but then you get access to a wellness planning site with educational resources, an online journal and other goodies, including the ability to take the test one more time, for one year).  Or you can hire a wellness coach (like yours truly) to help you work with what the questionnaire reveals, and come up with an individualized plan and ways to stick to it. 

We all have areas where we can improve.  It’s easy to get discouraged when society’s image of health and wellness is that Bowflex guy…or Heidi Klum.  Those images just keep us further and further away from ousting the cotton, because they are so unattainable!  But the truth is that wellness is not a destination, and 6-pack abs are not the goal.  Wellness is simply a path; a path that anyone can hop on, whether you have a chronic illness or not.

You begin the path by being completely aware and honest with where you are, then by being willing to learn how to improve.  You stay on the path by achieving small little growth spurts…small steps that you take successfully in just one area.  When this happens, you grow in self-efficacy; you begin to learn that you really can do what you set out to do.  Then, watch out.  It becomes easier to tackle areas where you never thought you could change.  It doesn’t ever get easy, of course, but it becomes possible. 

I never thought that I’d be able to run more than 4 miles since I turned 40 six years ago.  It seemed that I had peaked at 10 miles back when I was in my early 20’s and my PFT’s were in the late 90’s.  Then, this summer I foolishly agreed to run the Seattle half-marathon, the beneficiary being the Living Legacy Foundation, a nonprofit organization created to educate the Northwest community about organ and tissue donation.  Ana and Isa Stenzel became determined, and I mean determined, to do it, too. 

My first baby step came when I read Jeff Galloway’s book, “Half Marathon,” in which he highly recommends the “walk-break” -- one minute of walking for every two or three or four (depending on your speed and your level of training) of running.  What a concept!  You actually intend to give yourself a break.  It’s like writing “NAP” in your planner!  First, I tried a one-minute jog to one-minute walk ratio for a grand total of twenty minutes.  I was tired, but I was on to something!  Self-efficacy was budding.  Soon (well, ok, three months later), I was up to 45 minutes, then an hour, of running slowly for two minutes, then walking one.  I was possessed.  Before I knew it, I was taking a couple of HOURS on my “long” days, to train!  And as you can see from the picture, the training plan worked, and we all finished the 13.1 miles with smiles on our faces (when the skin defrosted)! 

In this example, my epiphany... visible when the cotton was removed… was the fact that there was an intelligent and pleasant way to run, and it worked!  Even Galloway, a former marathon champion, said so.  When you open your mind to the idea that something that is “good for you” doesn’t have to be uncomfortable…in fact, can even be enjoyable…many things never imagined become possible to accomplish.

So, find out where you have room and are ready to grow…make a plan…and begin…one small step at a time.  If not now, when?



 

OSTEOPOROSIS IN CYSTIC FIBROSIS
“Help…I’m Shrinking”


I’ve never understood why, at every quarterly appointment at every CF center I have attended since I can remember, I’ve had not only my weight but also my height recorded along with my vital signs.  Of course, it makes sense when you are a kid and growing…but in your 30’s and 40”s?  I quip every time to the poor nurse who is just doing her job, “What, do you think I’ve grown taller since my last visit?”  This last time, however, it became crystal clear why they do it…I’ve started to shrink!  Yes, I am a quarter of an inch shorter than I was three months ago.  I made her measure it twice. 
As with most things, there is a good and bad side to this.  The good side is that I have reached the age where people start shrinking in the usual way—the intervertebral disks in our backs start to compress and loose their “spring”. So, compared to the alternative, I guess I’m lucky to be shrinking.  The bad news is that the OTHER probable reason I am shrinking is because I am becoming more kyphotic (that means an exaggerated curving of the upper spine resulting in a rounded “hunchback” look).   There are a few other causes of kyphosis, but for me and other adults with CF, one likely cause is osteoporosis.
Osteoporosis is a condition characterized by low bone mass and poor bone structure, which together lead to an increased risk of fractures.  The normal loss of bone mineral that occurs with age begins at age 30, and occurs at approximately 1% per year throughout a lifetime.  If that isn’t bad enough, additional risk factors in the CF population include: small frame, hypogonadism resulting in low serum sex hormones, low calcium intake/absorption, low Vitamin D absorption, and corticosteroid use.  Recently, a study from Australia has suggested that either one or two copies of the DeltaF508 gene and male sex are additional independent risk factors for low bone mineral density in the CF population.  Clearly, we are quite likely to develop this problem if we are not careful, and possibly even if we are.  So the question becomes, “why does it matter?”
It matters for several reasons.  First, a broken hip is very painful and can land you in the hospital for many days…the last place you want to be.  Any bone break or injury just adds to the long list of medical issues to manage and will interfere with much needed physical activity.  Second, compression fractures of the vertebral bodies lead to a more rounded “hunchback” stature, which does not allow for full lung expansion.  Incomplete lung expansion means inefficient breathing.  Not helpful.  Lastly, with bones weak from osteoporosis, a simple coughing jag can lead to painful rib fractures…thus leading to “splinting” of the breath (another very inefficient method of breathing where only a very small volume of the lungs expand).  This, in turn, can lead to atelectasis or collapse of small portions of lung tissue, and pneumonia can ensue.
Convinced?  But all is not lost.  It is true that much is not within our control.  We can’t grow anymore. Many of us must take systemic prednisone, one of the worst bone eaters around (every time I pop a prednisone, an image of a little bone eating pacman comes to mind). There isn’t much help with hypogonadism either, other than hormone replacement therapy, which comes with its own list of problems.  Lately, however, there is great pharmacologic help with medicines such as Fosamax, which work by inhibiting bone breakdown.  But these drugs are extremely costly, and often not offered until a diagnosis of osteoporosis is already made.  A good plan, then, is to do all we can now to prevent or at least delay as long as possible the development of the disease, and then take the drugs when we need to.  We can minimize the risks by doing a few relatively simple things:  eat more calcium, take enough vitamin D, get some sunshine, and most importantly, get moving!
 I’m sure you already know about the importance of calcium but as a quick review, calcium is an essential nutrient (meaning the body cannot manufacture it—it must come from the diet), responsible for hundreds of chemical reactions in the body…so essential that if there is not enough of it in the blood, the body leeches it from its calcium warehouse, the skeleton. Vitamin D helps with intestinal absorption of calcium from the diet. As it is a fat-soluble vitamin, it is essential that we supplement our diets with extra vitamin D, since we don’t absorb it well from food sources.  Sunshine has gotten a pretty bad reputation, due to the associated skin cancer risks, but what many people don’t know is that our skin actually makes Vitamin D when it is exposed to the sun.  I’m not talking lying in the sun on aluminum foil…but 15-20 minutes a day without sunscreen on your arms and legs would probably do more good than harm (always wear sunscreen on your face—there’s no need to be old and WRINKLED with CF). 
Probably the most influence you have on your skeleton (good or bad) is in the area of physical activity.  In short, if you don’t move it you lose it, and for the reasons above, we lose it faster, and with great consequences.  Inactivity leads to both muscle and bone wasting.  Alternately, there is good evidence that both aerobic and strength training can slow down bone loss, and in many cases, actually make bone stronger.  This happens because bone is actually a living, breathing organ, constantly undergoing remodeling…some bone being laid down here, some chewed up over there.  When a muscle contracts against a force, the stress is transferred to the bone, and where the bone feels stress, new bone gets laid down.  The general rule is that if the exercise is weight-bearing (walking, running, jumping…things where your skeleton and muscles have to work against the force of gravity) or involves resistance work (weight training) by the large muscles of the body attached to the hips, spine, and shoulder girdle, then it will help strengthen bones in the areas where osteoporosis usually occurs. 
So, what to do?  Begin by walking…as often and as far as is comfortable.  Then, if you can, start to push yourself, gently, to the point where you feel slight discomfort—where you know you are working—and build at that intensity to where you can go for 30 minutes.  For people who are way past that…substitute jogging for walking…or jumping rope…or jazzercise…whatever you like to do on your feet.  When you have established an exercise habit, begin some resistance work.  Really, all you need to do is 20 minutes of weight lifting twice a week to reap the benefits to your bones.  One to two sets of 8-12 repetitions for each major muscle group (legs, back, abdominals, chest, shoulders, arms) is all it takes.  You don’t need to look like the Hulk.  You just don’t want to shrink, right? 

 Cystic Fibrosis and Time


As a fellow anatomic pathologist, I fully respect Dr. Dorothy Anderson’s description and naming of the constellation of signs and symptoms that we now call Cystic Fibrosis back in 1938.  Her observations marked the beginning of several decades of medical research, the outcome of which allows me  to sit at my computer at age 45 and write this. But for now, I would like to think way, way outside the box, and ask a question posed by one of my favorite spiritual teachers, Eckhart Tolle.  Does chronic disease really exist?  Does CF really exist?

In “The Power of Now”, Tolle differentiates your “life” from your “life situation”.  He speaks of your “life” as this very ”moment”, as opposed to your “life situation”, which is comprised of the circumstances or conditions of your life.  As such, your life situation is your “story”, which has a beginning, middle, and eventually, an end.  It exists on the horizontal axis of time.  However, there is a part of each of us that is unchanged over time and exists outside of time.  Think back to that day you learned to ride a bicycle.  Or think of throwing that high school graduation hat into the air with a big cheer.  Or perhaps, think to the moment when you said, “I do”….  In each of these situations, there was an awareness of what was happening, and that same awareness, unchanged, is aware that you are reading this page now.  That awareness is what Tolle would call “life”, and it does not exist in time.  It is NOW.  It does not change, because it lies on a “vertical” axis, with no past and no future.

Try not be offended by this (many of us are very attached to our CF), but imagine for a moment the possibility that CF is part of your “story”, existing on the horizontal axis of time.  At some point you were diagnosed.  In other words, a combination of sounds emitted from your doctor’s mouth (copied from the sounds Dr. Anderson decided best described this disease) was suddenly ascribed to YOU.  Those sounds became part of “who you were”.  The beginning of your CF story may have been when you were a baby, or later, but part of your identity was now as a “sufferer of” CF. The story then continued, with a different trajectory for each of us.  For some of us, the story has already ended.

Your story isn’t just CF, of course.  There is the story of what you do for a living, how your body has grown and changed, what you have learned over time, who you know, who is in your family, how many dogs you have loved and lost….If you think about it honestly, whenever you ask yourself the question “Who am I?”, the answer is usually just more of the story.  “I am a lawyer”, you say.  Then who were you before you got your JD?  “I am a father and husband”.  Who were you before you were married?  “I am sick” really means the physical part of “you” is not completely healthy at this point on the horizontal axis of time.  Yes, your body has weird and unusual chloride channels lining its epithelium.  But is your brain “sick”?  Is your heart “sick”?  Are your bones intact?  Can you see?  Are you breathing? Can you love?

“I” (the author) am a 45-year-old female “sufferer” of CF, retired physician, mother of two, partner, wellness coach, friend, daughter, sister…  Yeeeees, but other than being “female”, all of that has been variable throughout my life (and as I understand it, even being female could be changed, if I wished…).   Who was I when I was 9 months old, and had no language yet?

But, you argue, my brain is the same…!  No it isn’t.  Neuronal pathways are always changing; cells are dying; plaques and tangles are forming (at least, in our “old survivor” brains).  I’m sure you’ve heard that all of your cells are dying off and regenerating constantly. Nothing is constant on the horizontal axis of time.  The “life story” is ongoing, and ever changing, just as the body is.

Do you see the point of this tirade?  A part of you, and I would argue, the ”real” you, is the observer of your story, or as Tolle would say, “the awareness” within which your story unfolds.  Does that “awareness” have CF?  NO!  The body in which the “awareness” resides has CF!  So does CF really exist?  Only in time!  Only in the content of your life, the content that always changes and that describes you, but is NOT you.  The content is your life story, but is not your LIFE.  The real you is life itself, and that life is now, this moment.  “CF,” then, in this moment, is really reduced to what you are actually experiencing now.  Maybe that is a cough.  Maybe it is rapid breathing.  Perhaps it is pain in your joints as you walk.  Or, possibly, in THIS MOMENT, it is nothing at all.

“Wow,” you say, “Julie has completely lost it!”  But if it sounds kind of interesting to explore the idea of “this moment” where CF possibly doesn’t even exist, maybe you are asking, “How do I get there?”

I’m glad you asked.  This is the cool part.  Tolle describes “portals” into the NOW.  Entering these portals is sort of like a meditation, yet it is not meditation in the way we usually think of it.  I don’t know about you, but when I focus on my breath, I do NOT enter a state of bliss!  These portals are much easier to use. 

One portal, my personal favorite, is to become aware of the “inner body”.  Another way to describe the inner body is your “life force”, or “life energy”.  To do this, you simple sit or lie in a comfortable place, close your eyes, and ask yourself without moving it or looking at it, “Is there life in my left hand?”  This may take a few moments.  You probably will be tempted to move your hand, but don’t.  Just sit or lie in stillness and find out, “How do I know that my left hand is there…without looking at it or moving it?”  After awhile you become aware of the energy of your hand.  That is your “inner body”.  When you become aware of it in one hand, you then move your attention to the other hand.  Then, when you can feel it there, you try to feel it in both hands at once.  After that, you get adventurous, and move to your feet, and up your legs, to your torso, then arms, then neck and head.  With some practice, you can soon, at will, become aware of the “inner body” within your entire “outer body” (the one you can see and move). 

Here’s the catch:  the only way to feel this “inner body” is in the NOW.  You can’t do it if you are remembering the past, or worrying about or anticipating something in the future.  You can only feel your inner body in THIS MOMENT.  This technique essentially forces you into the “NOW,” the vertical, timeless dimension called awareness.  In this space, I would argue that there IS NO CF.   There may be a cough (see if you can maintain awareness of this life energy while you cough), but the energy is separate from the cough… from the body… from your thinking mind.  It’s wild.

If you get really into it, you can practice this awareness throughout the day.  You can do it during a treatment.  You can practice while folding clothes, or while walking, or while in a particularly unpleasant conversation with an ex-partner.  The more you practice, of course, the easier it becomes. 

There are other portals, of course.  But this is getting way too long.  I would be happy to share my experiences with them (all very legal!).  Just give me a call or email.  Until next time: BE FIT…BE STRONG…BE WELL!

TOP 10 REASONS TO BEGIN TO EXERCISE TODAY


The inspiration for this article occurred while (1) sitting on the toilet, and (2) beginning my third day of a large dose of prednisone…read, “It may seem slightly manic”.

In the manner of David Letterman, we will work backwards.

10:  As you no doubt gleaned from my last article, exercise is great for your bones.  They get stronger because of the stress you place on them, especially weight bearing exercises such as walking, running, dancing, and, importantly, resistance (weight) training.  I won’t wax on about this since I did in the last newsletter.

9:  Exercise, and more importantly, the feeling you have after a good workout, feels GREAT!  There is significant data in both non-CF and CF populations, that regular exercise reduces stress and leads to an overall improved sense of wellbeing.  There is an important caveat here, though.  The wrong type of exercise and the incorrect intensity of exercise will blow your resolve faster than anything imaginable.  It is KEY to pick what you like to do, and do it at an intensity that is slightly difficult, but still pleasant.  Breathe hard, but not so hard that you couldn’t talk or sing at the same time.  Remember too, that the correct intensity varies with the state of your body in the moment.  Today I am going to walk, not run.  Every cell in my body is telling me that I need to go easy today.  Some days, I’ll just take a walk in my imagination.  This is clearly not as helpful, but you do what you need to do.

8:  If you are still wondering why I mentioned the exact location of my inspiration…exercise (along with good hydration)…is one of the best ways to keep those digestive juices and peristaltic movements flowing.  Short of peanut M & M’s or calling my mother, I can think of no better way to get my bowels moving than a brisk walk following a meal and big glass of water.  (Mom, if you are reading this, don’t take offense, it’s just the way it is).   I must stress here that an out/back is not a good plan.  A better approach would be traveling a perimeter with your home in the center, a comfortable distance away.

7:  There is much we can’t control regarding our health, and our CF specifically.  It has taken a few decades for me to reach acceptance of this, and it didn’t always come easy.  There are two ways to look at this, of course.  The first is to lament, complain, feel sorry, and focus on what is wrong and what is being lost each day.  The other, and definitely the better way, is to instead focus intently on what IS within our control and take action.  This is where exercise fits in.  Not only do you have control of IF you exercise, but when and how hard and where and how long, etc…This isn’t the best part, though.  The best part is that you can and will effect change of your body as you become consistent with your program.  You will feel and look different, slowly but surely.   As this happens, a true sense of empowerment starts to creep into other areas of your life as well.  Try it.  It works.

6:  There is nothing quite as frightening as feeling like you can’t breathe.  That feeling of air hunger has a fancy medical name (of course), dyspnea.  Dyspnea is the result of an imbalance between the drive to breathe, which is governed by a complex respiratory center, and the response to that drive by the heart and lungs.   It isn’t something that can be measured or tested for.  It is a purely subjective experience.  The odd thing is that when people with obstructive lung disease begin a program of regular aerobic exercise, they begin to experience less dyspnea.  It isn’t clear why this happens, but it does.  I don’t know about you, but anything I can do to reduce the chances of feeling like I can’t breathe, I’m going to do.

5:  Nutritional balance is a huge concern for those with CF.   Simplified greatly, if we don’t take in (and absorb) as many calories as we expend, we lose weight.  It is well known in CF circles that a positive energy balance is associated with better lung function.  If you are malnourished, you are more likely to have worsening problems.  I hear you…you are saying “Well why exercise, then?  I should just eat a lot and not burn all those calories doing my exercise!”  Wrong.  It turns out that exercise turns us into lean, mean, metabolic machines.  Exercise, especially resistance exercise, builds muscle mass.  You do not miraculously turn excess body fat into muscle, as some magazine ads would suggest, but you do shift your body composition in the positive direction of more lean muscle tissue to relatively less body fat. This is good for more than just aesthetic reasons, although those are also important.  A higher lean body mass (with less fat) leads to more efficient energy usage.  Efficiency is key.  An efficient system works smoothly, with less waste.

4:  You get to eat more!  Better yet, you actually feel like eating more!  There is no question that regular, vigorous exercise improves appetite.  I’m sure I don’t need to go on and on about why this is important (see #5).

3:  Posture!  You know the stance.  There is, for mechanical reasons, this lovely development of the classic “barrel chest” after many long, hard years with CF.   The lungs have a lot of “dead” space where air is just trapped, and the normal elasticity of the lung tissue is lost.  So we walk around with hyperinflated lungs and an expanding chest circumference—with no plastic surgery involved!  Unfortunately, this occurs at the same time we, naturally, with age and with our lifestyles and with our propensity for osteoporosis, begin what I term “the droop”.  This refers to the forward slouching of the shoulders, the rounding of the upper back, and that “stooped over” shuffle as we walk.  Not a pretty site, AND, not a good mechanical position to be in for optimal air exchange.  Maybe people with normal lungs can get away with that, but why should we?  This can be addressed, very effectively, with exercises that strengthen the upper back and “core” muscles of the trunk, as well as those that stretch and increase the flexibility of the chest and anterior shoulders.  We can, by training and stretching the muscles surrounding our lungs, improve the chances of air getting to where it can be utilized.  I think that is worth doing.

2:  Life is hard.  It takes a lot of energy…for anyone.  And when your body spends a large proportion of its available energy on dealing with CF, sometimes it feels like there isn’t much left for everything else.  So if you can find a way to make the everyday activities of life seem easier, it makes sense to do it, right?  It seems that adding one more thing to do each day…exercise…. couldn’t possibly help with this issue, but it actually does.  First, your overall energy level improves when you regularly exercise.  Second, you have the ability to develop greater endurance, even with CF.  So if you train, you will be able to do more, for a longer period of time, without fatigue. Strength comes into play as well.  If you have trained your body to be that lean, mean, metabolic  machine that it CAN be, every day things you have to do are easier.  Clearly…you are stronger, so it takes less effort to lift that kid…clean that house…chase that kid…do that laundry…feed that kid…push the vacuum cleaner…pull that kid off the other kid (are you getting a sense of my life yet?).

1:  The nap!  Seriously.  There is nothing better for your immunity than good rest.  For me, a day without a nap is like a day without sunshine.  The beauty of exercise is that 1) it gives you a great excuse for a good nap afterward, and 2) it tires you out physically so that you are ready for that immune enhancing snooze.  Speaking of immunity, there is now convincing evidence from the field of psychoneuroimmunology (say that five times fast) that regular, moderate exercise independently enhances both cellular and humoral immunity in not just rats, but humans as well.  That translates to better antibody production, better response to that yearly flu vaccine, and faster wound healing.

0:  Sorry, but I thought of one more reason that I could not leave out.  This is the one that ties this article to the theme of the rest of the newsletter.  Are you ready?  Exercising out there in the world where you can be seen is important because you are out and proud with your CF!  You are an adult with CF beating the odds and the world should see you do it!  Ignore those “you really should quit smoking” looks and know that you are doing what it takes to live the best can with CF.  As they say in the world of tennis shoe marketing, JUST DO IT!