Saline Chronicles: The Dreaded C Word



I have a pet peeve. It is the word “compliance.”

This word is thrown around quite a bit in CF circles, especially among medical professionals.  It is used frequently in research papers, where there is an understanding of what it means.  Physicians and other researchers are very concerned that people with CF don’t always do everything that they are told to do to keep their disease and all of its various manifestations at bay.  If someone fails to do all required treatments or take all medications or exercise daily, they are coined “non-compliant.” Did I say that I hate that word?

Just do me a favor and check out your friendly thesaurus to find other words that mean the same thing.  Never mind, I’ll help you out. Here are a few:  docile, easy, manageable, meek, submissive, yielding.  In other words, spineless, with no worthwhile opinion on the matter. Now in the olden days, when Doctors were GOD (which is why I capitalized doctor), it was just assumed that one followed one’s doctor’s orders, no questions asked.  But times have changed, and if you don’t believe me, turn on your TV and count how many different pharmaceuticals tell you, the patient, to “ask your doctor if this could be right for you.”  Like it or not, patients are a very important part of the equation now.  This is a good thing (not the television commercial part…that is a very crazy and ridiculous thing).

I’m not harping on CF doctors.  I actually think most realize that the patient has very important information, like how much it is really possible for them to do in a given 24 hour period.  So why can’t we drop the word?

I have an alternative.  How about instead of the word compliance, we use “consistent.”  How consistent someone is with their thrice daily aerosols, or 250 pills to swallow, or blood glucose monitoring, or airway clearance technique of choice, or exercise, or any of the myriad other things we must do daily, sounds SO much better than “compliant.” There is no judgement in the word consistent.  It implies that we are all trying hard, but sometimes life gets in the way.  Check out some of the synonyms of my substitute word:  dependable, persistent, rational, steady, true, regular.  I like dependable and steady so much more than meek and submissive, don’t you?

What say you, CF peeps?

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Willpower: Use It And/Or Lose It

willpowerDo you ever say to yourself, “I am such a loser!  Why can’t I, as the commercial says, Just Do It? If I just had more willpower, more control over myself, I could get this stupid project done!”  Or (ahemmm), “Why do I always lose my patience (euphemism) with my kids/spouse/pets right before dinner?  I seem to be in such a better mood in the morning.”  There is a word for what you are lacking at such times…well, actually there are three words but we are going to ignore two of them–self compassion– for now.

The word that I want to focus on for this post is “willpower.” My definition for willpower is essentially the ability to control yourself and carry out a goal that you have set for yourself.  It’s the ability to allow frontal cortex portion of your brain–the executive, decision making part of it–to dominate your mammalian brain, where emotions and basal urges reside. People generally believe that willpower is something you either have or don’t have, much like musical or artistic ability.  Of course, possession of willpower is lauded by society, and evidence of the lack of willpower leads to criticism and judgmental frowns of disapproval.  The ability to force oneself to study or diligently practice a sport or musical instrument leads to good grades and prowess on the field or stage.  We admire people with these skills and we give them rewards (grades, applause, etc.). But when lack of willpower leads to problems such as addiction or obesity or flunking out of school, it is not hard to locate critics.

But thinking deeper about this issue, it is rare for anyone to have self-discipline (willpower) in all aspects of life, just as it is it is pretty hard to find a person with a normal brain who shows absolutely no control whatsoever over their impulses or urges.  Willpower just doesn’t work that way.  It is easy to think of professional athletes (who are obviously capable of focused, diligent practice or else they wouldn’t be professional athletes), who show absolutely no control in their lives off the field. Similarly, I’ll bet you can think of an award winning actor or two who can’t seem to stay in a marriage!  It’s not, “you either have it or you don’t.”  Instead, willpower exists in everyone as a finite quantity…you only have so much of it.

Hmmm, Radishes vs. Chocolate Chip Cookies

But don’t take my word for it.  There are several well designed scientific studies which prove this point.  The more often quoted one involved college students (don’t they all?) divided randomly into two groups.  One group of students were told to sit in a room where they could only eat radishes when freshly baked chocolate chip cookies were right next to the bowl of radishes–pure evil on the part of the researchers.  The other group could eat all the freshly baked chocolate chip cookies their little hearts desired.  The students didn’t know this was a study of willpower. After this torture (for group one students) went on for awhile, each student was given a puzzle to do.  The catch was that the puzzle was impossible to complete.  Amazingly, the students who got to eat whatever they wanted persisted trying to complete the puzzle over twice as long as the students who ate radishes!  Why?  Because the radish eaters had exhausted their willpower resources by not eating the damn cookies.  Persistence at working a hard puzzle requires willpower, and they had none left.

This study and others like it demonstrate that willpower is a finite quantity that gets used up over the course of a day of self-control.  It comes back, don’t worry, but you need to rest after exerting a huge amount of willpower and not immediately tax it again with a task that requires large amounts of self-control.  For example, after a day of work, where you are faced with decisions, socially acceptable interactions with others, and the need to focus and produce for long periods of time, it is NOT a good idea to stop at a bar on the way home for happy hour if one of your goals is to lose weight.  That free food will be impossible to avoid.  The fact is that when you use willpower, you need to rest for awhile before you tax it again, or you are setting yourself up for failure.

Willpower Is A Muscle

Not literally.  But the analogy is perfect.  In the above scenario, your willpower “muscle” was fried from a daylong “workout” at work.  It was cooked and could barely lift its arms to comb its hair.  Why would you try to get it to work again (at that bar) without resting it first?

The interesting thing is that, like a muscle, willpower gets stronger and develops greater capacity for work when you build it up with consistent “workouts.”  When you set small goals and achieve them daily, you are building your willpower (and your confidence).  Then you gradually can set slightly harder goals and grow your willpower capacity over time.  This takes persistence, but it also takes patience.  It is important to bite off little goals at a time and be successful, taking on slightly harder challenges only when the initial small step is automatic…like brushing your teeth.

What does this have to do with living with CF?  A lot.  Daily treatment regimens take a ton of willpower to accomplish at first.  When I coach someone who barely gets in one treatment a day, and hasn’t seen her Vest since “the move” three years ago, I don’t start by asking her to Vest twice a day and use aerosols three times a day, in addition to starting a daily walking program…even if that is exactly what her CF team is telling her and she knows that is what she should be doing!  We start small…one treatment a day consistently, and maybe check in the garage for the missing Vest.  If adding a new supplement like NAC three times/day, we might start with one dose/day until that is a no-brainer, then add a second dose, etc.  Eventually, as these things become automatic, they don’t require willpower any longer.  Now they are entrenched habits, and willpower can be used on something else.

The same rules apply when it comes to fitness goals, especially when you are just starting out, or just starting back after a health setback.  Remember, it will take willpower to do all you need to do to regain your health.  You’ll need to get back on your treatment regimen, to your own method of airway clearance, to eating well and enough to recover, and to making sure to get enough sleep (especially if they sent you home with IV’s to infuse…often at night).  There may not be a ton left over for jumping right back into your 180 lb squat program.  A great, and easy, way to start back might be 20 air squats as soon as you wake up.  Easy peasy.  No weight equipment is required.  You can use if/then planning discussed in an earlier post to set up your program.  You would write down somewhere, “when I wake up, I will do 20 squats before I get my coffee.”  Before you know it, you’ll be back under a barbell and your legs will look less like toothpicks:-)

Willpower is not something you either have or don’t have.  We all have it.  We also all have the capacity to use it up, and then make less than wise choices if we don’t learn to chill a bit before we challenge it again.  Finally, we all have the power to train up our willpower just like we train our muscles.

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The Slight Edge

I’m currently reading a book called “The Slight Edge,” by Jeff Olson. The basic message is that significant change is made quite easily if taken one small and consistent step at a time. As a wellness coach, I have read quite a bit about change psychology, and the directness and simplicity of this author’s approach is very appealing to me. I’ve decided to take it on a test drive, and am trying to revive my blog with this approach. When I first started blogging, I loved doing it and felt like it was an awesome way to get my message(s) out about living well despite having ongoing and serious health concerns. Then, life got in the way, and blogging took a back seat to just about everything else that I could think of. Enter the Slight Edge.  I will be posting more.

It seems to me that life is somewhat unfair in that good habits seem to require effort to develop, while bad habits form quite easily simply by being unconscious about choices we make.  The Slight Edge basically refutes this, by making the very obvious point that over time, simply taking one small action each day will compound into huge and lasting change.  On the other hand, not taking that one action will also compound.  Unfortunately, compounding in this negative sense can be disastrous.

A very clear example for the cystic fibrosis peeps out there is doing your daily aerosol treatments.  These are very easy to do (note that I didn’t say “convenient” or “pleasant”).  Seriously…you just sit and inhale stuff.  It’s not like you aren’t going to inhale anyway!  And sitting in a chair holding a nebulizer is not exactly manual labor.  So it’s easy to do treatments.

But it is also very easy to blow them off.  There are a myriad of things that, in the moment, seem way more important than that hypertonic saline, right?  Sleeping in, stopping for coffee before work, playing with your cat, browsing favorite websites, cleaning your closets, plucking your eyebrows…you name it.  Who wants to sit and cough?

But now imagine what happens if that decision to blow off your treatments is compounded, day after day.  Then compare that image to what it looks like if you make that simple decision to do the treatments every day.  Stretch your imagination out to a month or two (here is where I wish you were a pathologist, because my mental image is a slide of healthy, pristine lung tissue vs. nastiness on a slide).  Two very, very different images as a result of two sides of a decisional coin, compounded over time.

Of course, this relates to just about any area of life…not just medical treatments.  Decisions about fitness habits, what you eat or drink, how you relate to people, how you work, and how you deal with stress all compound over time this way.  On a day-to-day basis, it doesn’t matter in a huge way whether you take your daily walk or sit for your meditation.  Not doing them ONE day is easy, and it won’t make a dent in your overall fitness or stress level.  Alternately, actually doing these things probably aren’t going to matter a huge amount on that particular day. But compound these decisions over time and see what happens.

What one life-enhancing thing, something that is both very easy to do but also very easy to blow off, can you to do, today and every day?  Gotta go do my saline now.


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Step Two of The Perfect Workout: Just Move It

After  you have read “The Perfect Workout,” you will have a basic understanding of the eight steps, in the right order, to use as the backbone of your workout.    Step One  (discussed here) of your workout,  involves rolling out soft tissue knots and tight areas with the foam roller, or a small ball (or pair of balls).

Now it is time to move on to Step Two, which is all about improving mobility.  Mobility is becoming one of my favorite subjects lately, and I have been working diligently to improve my own.  It is not a complex subject; mobility is simply the ability to move.  As it relates to exercise, mobility is about the ability of every joint in your body to move through its natural range of motion.  Now, there are many, many joints in your body…somewhere between the mid 200’s to mid 300’s (the definition of “joint” is a bit fuzzy).  Most of those don’t need a lot of your attention. But before you stress your body with exercise, it is good to circulate a bit of synovial fluid (the stuff that lubricates joints) and wake up the millions of mechanoreceptors that live around your major joints…especially the ones you plan on taxing during your workout.

I have many tight and not so smoothly moving areas that I like to focus on, but the one area I’d like to talk about at length here, because I am certain that we all share this issue, is the thoracic spine.

Think about your posture.  Adults with CF very commonly have poor posture, and most of us with poor posture know that it is a problem.  The causes of the problem are many.  First, we are getting older, and with age comes increasing reinforcement of poor movement patterns.  The body adapts perfectly to what is asked of it.  If you start slumping your shoulders when you sit at the computer, or drive, or breathe, the body decides this is the position it is to always assume. Second, with age comes bone loss (especially in CF), which can lead to osteoporosis and subsequent hunching of the upper spine (technically called kyphosis).  Finally, as breathing mechanics change with increasing lung disease, there is consequential structural alteration of the thoracic cavity that worsens kyphosis.

Why is this?  Because the body tries to offset or balance the  increased hunching (kyphosis) of the thoracic spine with an over-pronounced swayback of the lumbar spine, also known as lordosis.  This leads to pelvic and hip problems, and the result is a mess. Sounds bad, right?  It is, and the worst part is that all of this leads to a very common problem in adults with CF, back pain.  The picture below illustrates this problem.

The thoracic spine is actually supposed to be very flexible.  It is supposed to flex, to extend and to rotate.  In contrast, the lumbar spine is designed more for stability and less for flexibility.  Sadly, most people have this backwards, and tend to use the lumbar spine more than the thoracic and hips for bending and rotating.  This often leads to pain, and commonly to injury.  Because the thoracic spine in CF tends to be even more “frozen” in place because of the above-mentioned issues, pain is extremely common.

But wait, there’s more.  Pain is bad enough, but what is worse is that the combination of poor posture and pain leads to inhibited airway clearance, less expansion of lung tissue and deteriorating lung function. Stiff and unmoving thoracic vertebrae also increase the work of breathing (isn’t it hard enough?).  None of this is good.  Not good at all.

But here is the good news:  Some of the postural problems in CF can be corrected.  Those having to do with muscle  and soft tissue tightness are reversible!  Stiff joints can be mobilized with specific exercises and soft tissues can be stretched to allow for normal alignment and movement.

This is why at least 10 minutes of your workout should be spent waking up and moving your thoracic spine.  If you are like me, you literally need to teach your brain exactly where this part of your back is, and how to move it because of something called sensory-motor amnesia.  This is exactly what it sounds like:  When you don’t move a body part much, the brain 1) forgets where it is, and 2) forgets how to move it.

I’m Convinced.  What Should I Do?

First, take a breath and don’t panic.  Then, check with your doctor and make sure these are safe for you, especially if you have osteoporosis. Next, to get a rough assessment of the amount of kyphosis in your upper spine, do this test.

Lie down on your back with your feet on the floor, knees bent to about 90 degrees.  Now press your low back into the ground and keep it there as you do the following:  bring your arms up and over your head, keeping them straight with your biceps muscles close to your ears.  Don’t move into pain, but see if you can bring your wrists and back of hands to the ground above your head.  If you have normal thoracic mobility, this is a breeze.  If you can’t, you are like me and have some pretty stiff and sticky thoracic vertebrae.  The following exercises are for you.  If you can, and want to keep it this way, the following exercises are for you.

1)Spend quality time with your double tennis ball contraption (link) every day…before your workout as I discussed in the previous article, and also throughout the day, especially if you sit at a desk a lot.  If you are bigger and have more muscle mass, you might graduate to double lacrosse balls.  This is not in my future.

2) Roll your upper back with a foam roller.  As you do this, bring your hands behind your head and keep your elbows close together (this gets your shoulder blades out of the way).  Slowly roll up and down the spine, stopping at the neck above, and the lowest rib below.  Try to “curl” yourself around the roll by aiming the top of your head to the ground.  If you have tight spots that are slightly uncomfortable, spend some time there.

3) Get on hands and knees and push your butt slightly back toward your heels.  Now take one hand (for example, the right) and place it behind your head by bending your elbow.  Now, keeping your butt back, rotate your spine by reaching the right (bent) elbow toward your left knee.  Come back up and do this several times, slowly.  Repeat on the other side.

4) Stay on hands and knees, but  this time sit all the way back onto your heels.  Take right hand again behind your head, and now rotate it up, toward the ceiling, trying to open your chest to the ceiling as well.  Don’t move your butt–this is keeping the lumbar from moving, thus isolating the upper back.  Repeat on the other side.

The sensory-motor amnesia problem is a bit more complicated, but can also be remedied with some drills taken from a system called Z-health.  I am currently immersed in learning Z-health and will write more about it in future posts, but these are some basic exercises that will begin waking up and mobilizing the spine.  Try them and then retest with the “raising the hands over the head” exercise.  My bet is that it will improve.  I don’t start my workout until I can do this without discomfort (but it has taken awhile to get there).  Start slowly, but be persistent and patient.  Your spine and lungs (and posture) will thank you.

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Mindfulness-Based Stress Reduction for People With Cystic Fibrosis

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If you are interested in the class, more information can be found, as well as a direct registration page, here:

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