Days 2.5. 2.75, 2.875, etc.

by on April 28, 2011

AKA…I am going out of town for a few days, sans computer.

But all is not lost.  The best thing to do is to work on improving your track sheet percentages each day, and continue with your daily walks.  If you feel like it, break into a jog for a few seconds every now and then.  It’s spring!

While you’re out enjoying yourself (remember…don’t push too hard), try some mindfulness intervals with sound.  I like to start with sound because I find it the easiest to really focus on.

Enjoy the weekend and know that I am getting my butt kicked at the Russian Kettlebell Challenge (oh, the goals I set)!

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CF Wellness Bootcamp: Day Two

by on April 27, 2011



Today, you begin by reading your well-being action plan.  This is simply to place those action items at the forefront of your brain, so as your day proceeds, you will be more likely to remember to do them.  Throughout the day, your goal is to complete your action items.  Very simple.  Hopefully, you chose action items that were not too daunting, and you will get to experience a wonderful sense of accomplishment each day.

Perhaps you gleaned from the chapter on exercise that it is one of my favorite topics.  It is because of this that I introduce it in this very early stage of Boot Camp.  Don’t worry.  It’s not going to be difficult.

In fact, the goal for today is to go for an easy, gentle walk with the sole intention of enjoying the feeling of movement.  The reason for introducing movement early is obvious.  Not so obvious is why I will ask you to merge movement with awareness of sensations.

Here is why:  I look at the human body as an energy transformer.  We take energy in, in the form of sensory input, food and fluids, and through the air we breathe.   We then use this energy to maintain our body and to live…to work, play, move, communicate, think, etc.

Throughout the boot camp, we are going to explore this energy management, because a well-managed energy system leads to optimal wellness.  In today’s walk, and for the next few days, we are going to look at how you take in energy through the senses.

I hope you are enjoying beautiful weather, as I am as I type this.  If so, go for a walk around your neighborhood and focus on what you hear.  Try to get out of your mind… This is easier to do with what I call “interval mindfulness.”  I learned this from a ChiRunning seminar.  The idea stems from the fact that when attempting to focus on something you are not used to focusing on, it is best to do it for short intervals, then relax for awhile and think about whatever you want, then go back to the focus, etc.

So “mindfulness” intervals are just that–short periods of time where thoughts get put on hold temporarily (don’t worry, you get to think again) and you become mindful (pay attention to) one thing, and only one thing.   It is a bit like a moving meditation.

For today, I suggest you focus on hearing for one minute, no more.  Pay close attention to everything you hear.  Try to find as many sounds as possible.  When you start to think…and you will…just gently catch yourself and go back to listening.

When the minute is over, relax and just walk as you normally would for a minute or two.  This “normal” interval is just that, the way you normally are in the world… thinking, seeing, imagining, singing…whatever.

Then, do it again…and again.  Lather, rinse, repeat.  Walk for at least 15 minutes or so.  Don’t think of it as exercise for your body (even though it is).  Instead, think of it building your “attention” muscle.  These “mindfulness intervals” will show up frequently in the Boot Camp (like…tomorrow).  My hope is that you will begin to enjoy them.

If your weather is less than ideal, either bundle up and do it anyway, OR, drive to a shopping mall and walk.  The sounds will be different, but just as interesting.

Finally, don’t forget to check off your Wellness Worksheet Action Plan at the end of the day.  Count up the number of “yes I did that”, and divide that number by the number of things on your action plan list.  This is your Daily Percentage.

Don’t get mad at yourself if you didn’t get 100%.  If you did, great!  If not, it gives you a goal to beat tomorrow!






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Disclaimer…and DAY ONE

The following twenty-one blog posts will be taken from the e-book-to-be that I wrote two years ago.  As I stated before, I wrote them as chapters in a book, which then sat on my computer for…two years.  Since each of these has to be slightly modified, and since there is no way I’m going to be able to post daily after  a six months hiatus, I thought I needed to write this brief disclaimer.  My goal is to get each post up, and then bundle them together into a pdf package which will become my “gift” when people sign up to be on my email list.  I know that there is a way to post date the posts…such that I could load them all and time them to go out sequentially.  However, that sounds like such a daunting task that I’m pretty sure I would lose steam and it would sit for another two years.  Therefore, it will take longer than 21 days to get the entire Boot Camp up on this site.

So if you are planning to start today (and if you are, hooray for you), there is a slight modification.  Each day, simply repeat the exercises for the previous post until the next post.   It won’t hurt anything at all.  You will still get stronger and healthier, it will just be stretched out in time a bit. It may get a bit weird if I ask you to journal about a specific thing.  In that case, you can either just read what you wrote the first day, or take the opportunity to expand on it.  If one day, I ask you to do a meditation, you’d simply repeat it, or maybe prolong it a bit.  Get it?  Okay, here we go:

Ready, Set….GO


I am sure you have seen the “YOU” books at your local bookstore:  “YOU: The Owner’s Manuel,” “YOU: On a Diet,” “YOU:  Staying Young,” You: Staying Young Workout,” “YOU: On a Walk.”  Drs. Oz and Roizen have quite a thing going.

I have a proposal.  On this first day of Boot Camp, you get to describe “YOU:  Your Best Self.”  It is very hard to stay on track and reach a destination without knowing exactly where you are trying to go. This very important first exercise today is to define your vision for you own wellness. Later, we will work on defining your path to this destination.  This isn’t what your parents or spouse or doctors want of you.  This is what you want.

Now, I want you to get out a pencil or pen and some paper (hopefully somewhere you can return to easily…not the back of a receipt or junk mail).  Take a few long, slow breaths, and start describing your best self.  Be completely honest regarding your potential. Be realistic, but also be courageous enough to stretch a little.  What do you look like?  How do you feel?  What is your expression?  What are you doing?  Who are you with? What are you wearing?  Where are you?  How are you spending your days?  What is important to you?

Just keep writing.  Don’t stop to spell check.  Don’t worry about grammar.  Pretend that you are painting a picture with words.  Leave out no detail.

Done?  Are you sure?  Go back and read it just to see if you left anything out.  As you read and imagine yourself as this person in your “word picture.” How do you feel?  Excited?  Nervous?  Not sure you can do this?  That would be perfectly normal.  It can be daunting to really reflect on your true potential.

Now pick out the ONE most important aspect of this vision.  It could be the smile on your face.  It could be that you are working at a very different job than you currently have.  Maybe it is that you are swimming the English Channel.  Just pick out the ONE thing, and write it down.  Is there a connection between this thing and the other parts of your vision?  This is frequently the case.

Good.  Now what is the reason that you picked that one thing over the others?  Why is this thing so important to you?  Keep asking yourself “why?” until something resonates as a “Yes, that’s it!  That is why!”  Here is what I mean:

I want to be a certified kettlebell instructor.  Ok, Julie, why is this important?

Because I set this as a fitness goal when I was depressed about being sick and needed motivation.  Okay, why did you set this as your goal?

Because this is an intense training that even “normal” people have a very hard time completing.  And why is it important that you complete something difficult for healthy people?

Because I want to feel healthy for as long as I can.

Ah ha!  You see how this works?

When you come to your “ah ha” write it down in BOLD print.  This is your motivator (or motivators if you have more than one answer to “why?”) for the next 21 days.  When you get discouraged, or tired, or you think about quitting, come back to this main REASON (S) I AM DOING THIS.




All right, now get a new sheet of paper.  Come up with four to five long-term goals that will get you closer to the VISION that you just described.  I want these to be action goals…things that you will be doing regularly in one year, which will put you firmly on the path to your vision.  So, for instance, don’t write, “I will be a famous pop star.”  Instead, it would be something like, “I will write music two hours a day, and sing publicly three nights a week.”  “I will eat a peanut butter and honey sandwich every night before bed” would be much better than “I will weight 10 lbs. more than I do now.”

Try to have your goals cover several different dimensions of wellness.  They could have to do with exercise (hint), nutrition, stress management, relationship, disease management, intimacy, work/play balance, communication, cognitive or emotional patterns, spirituality, or finding meaning.  Or maybe you have other categories I haven’t listed.  Pick a few that seem most important to work on at this stage of your life.

Don’t overdo it here.  People like to set goals.  It’s fun.  But if you set too many, the chances that you will achieve them diminish greatly.  Less is more.  Pick at least three, but no more than five, goals.  Make sure they are SMART.

  • Specific:  If you are going to start exercising, exactly what will you do, how many days/week, and for how long?
  • Measurable:  You need to be able to know with 100% certainty when you have achieved your goal.  For instance, completing a 5K jog is measurable.  “Becoming a jogger” is not.
  • Actionable:  The goal needs to be something that you can do, or that takes action on your part.  An example is “I will call a friend weekly,” not, “I will be liked by my friends.”
  • Realistic:  I’m 50, with CF, and I sink.  I should not, for instance, have the previously mentioned goal of swimming the English Channel.
  • Time Bound:  There needs to be an end point.  If not, we either procrastinate, or forget what we are trying to accomplish.




Now, you need another sheet of paper.  You may want to do this on a spreadsheet software program, but you can also just do it by hand.

If you want to do it yourself, make a grid, with 21 columns (days) across the top horizontally, and up to five rows vertically.  The name of each row is going to be ONE action item that you deem essential to do every day in order to make a darn good start at meeting your long-term goals.

Here is why.  If you do these things every day for 21 days, you have created a habit, a good habit that will hopefully carry you forward throughout the year as you begin to bring your Wellness Vision to life.

As a rough guide, try to come up with at least one action item for each long-term goal.  For example, while I was on my IV antibiotics, my vision was that I was running another half-marathon with my friend before the end of 2008.  My long-term goal in line with this vision was to be running (walk/jogging) four days per week, with one long run of up to 10 miles per week by the time of the race.  During my infusions, my daily action items to put me on the path toward this goal were to walk 30 minutes every day, and to do alternating days of 30 minutes of gentle yoga or lower body resistance work.

Ok, the tracking sheet is your final piece of mental/paperwork today.  Good job.  All you have left to do now is prepare to begin your action steps tomorrow.  Do you need to find your walking shoes?  Do you need to go to the grocery store?  Do you need to create a peaceful spot to meditate?  Whatever it is, finish up today by making all the preparations.

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CF Wellness Boot Camp – Prepare!

by on April 24, 2011
in BOOT CAMP, general

A main reason people fail with New Year’s Resolutions and other heartfelt promises to themselves is they don’t prepare!  You can’t just wake up one day after never eating properly a day in your life, say, “I will now eat a healthy diet” and expect to succeed. It’s just not that simple, as my favorite pathology professor used to say.

First, you really need to figure out why you want to eat better, and find motivators that will be there for you when your resolve wanes.  Then, you need to actually LEARN what is healthy to eat.  You also need to get some support with your new resolve.  Maybe you’ll find a friend to make this change with you, or at least someone who will support you in your endeavor.  You also need to plan ahead what you will do when the usual unhealthy temptations are in front of you, or when you have minimal time to cook.  Then you will need to shop for healthy food, right?  You’ll make a list, and just do it.  It would also be helpful if you got rid of all of the unhealthy food in your house.  Why keep it?  Lastly, you will want to set some reasonable goals around your eating if you want to succeed.  It is much more likely that you will achieve your goal of eating a healthy diet if you start small, with easily achievable steps, and then build on those successes.

ALL of these things need to happen before you take your first bite of fresh organic baby greens.

So let’s begin by gathering what you’ll need for the next three weeks.  First, you need a journal, or something to write in.  You also need a pair of comfortable walking/jogging shoes, and an exercise mat or towel to do some light stretching exercises (I am assuming that after reading the last post, you will be convinced that some daily exercise should be one of your daily activities).  An inexpensive pedometer would be nice (one that just counts steps…it is not necessary that it talk to you or calculate your exact longitude and latitude).  And, finally, internet access will be helpful for some of the activities that I will ask you to do.

The following pieces of exercise equipment will be extremely helpful if you plan on following the exercise instructions demonstrated  on the YouTube channel  as part of your Action Plan:

Stability ball: (usually 65 cm is a good size, if you are 5 ft or less, go with 55 cm; 5’7 (how did you get to be that tall?) or up, go with 75 cm).

Resistance tubing with handles:  You can find this at any sporting good store.  Try to get at least one tube with very easy resistance and one with medium resistance (they are color coded…just look at the packaging to get the right colors).  If you are strong, and money isn’t a huge issue, get the hard resistance, too, or buy some dumbbells.

That’s it!  You don’t need the Bean, or Perfect Push-Ups, or an expensive gym membership.  You can do all the exercises in the comfort and privacy of your own home.

Finally, and probably most importantly, what you will need is an attitude of pure curiosity.  Can I feel better?  Could this really help?  I wonder what would happen if I really did everything she says for the whole three weeks?

Here is what you DON’T need, and what you should put far, far away for the next three weeks:

You know who they are.  These are the people in your life who can’t seem to think a positive thought.  Sometimes, these are the people who let us get away with feeling like “victims of CF.” Don’t let anyone sway you from taking care of yourself for the next three weeks, and just see what happens.

The idea that “nothing you do can help.”
Sometimes, we are our own worst “naysayer.”  There is plenty you can do to feel better.  No, this program isn’t likely going to change your pulmonary function test results, but if you take it seriously, you might improve your attitude and enjoyment of the life you do have.

Junk and fast food.
Let’s just put this stuff away for three weeks.  I know you need calories.  I am not saying, “don’t eat food.”  I am saying, try to find and eat healthy food only, for just three weeks.  Be curious, and see if you can imagine your body as an infant, and you as the mother/father.  You wouldn’t feed an infant french fries…or sugar laden soft drinks…or Twinkies.  You would feed him/her what nature intended for the baby to eat.  Think hard about this…what do you think is “natural” about KFC?   Cheetos?  Whoppers?  For just three weeks, as an experiment, eat whole foods…as they are found in nature.  Max out on fruits and vegetables, whole grains, nuts, legumes, lean sources of protein, healthy sources of fat (olive oil, avocados, more nuts and nut butters) and fresh water.  Just make sure to eat early, eat healthy, eat often, and eat a lot!

Internet boards that are full of pessimists
Why waste the energy?

Negative/violent television and radio
Again, why waste the energy paying attention to negative garbage?

Here comes the pep talk.  You only get one body.  I know…yours is a bit challenging to take care of, but it’s still all you’ve got.  It’s easy (I’ve been there) to believe that this body of yours is defined by the fact that your CFTR protein doesn’t work that well (or at all).  One gene out of about 30,000 is messed up.   Yes, I know…that one stupid gene can create a lot of havoc.  But many, many things still work quite well.  While there is much we cannot control about having CF, there is still much we can control in how we respond to our CF.   This is what this program is about.

Finally, you need to let your MD know that you are doing this 21-day program, which will (hopefully) include some exercise and healthful dietary changes.  I won’t be asking you to change any medications or take any weird herbs or do high colonics.  The most radical exercise will likely be a guided meditation or two.  My guess is that she/he will be all for it, but it is always smart to be on the same page with your medical team.

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Boot Camp – Why Exercise is Essential

by on April 22, 2011

I have to confess, my passion for this topic is the reason I am writing up a three week boot camp plan.  After an exacerbation, the first thing I know that I need to get back to is my exercise regimen…but it is frustrating (to put it mildly)  to feel like I have to start all over every dang time.  I know I’m not alone in this, so one of the goals of this Boot Camp is to provide a gradual re-introduction to exercise which is gentle and non-intimidating.

I am biased, and I am the first to admit it.  It is my humble, yet fairly educated, opinion that a regular exercise program should be a part of any CF patient’s routine daily health maintenance.  I place daily movement right up there with enzymes and pulmonary clearance.  Why?  Let me count the ways exercise rocks:

When you don’t use your lungs, and I mean really deeply breathe to the point where you might get some odd looks because of your cough, you won’t be as successful in getting the crud out of your airways.  It just helps.  Clearly then, exercising to the point where you breathe deeper and faster induces lung clearance.  Not only that, but there have been some intriguing studies showing that fairly intense aerobic exercise inhibits a sodium channel, which has a hydrating effect on airway mucus.  Go outside and run around the block a few times if you don’t believe me.  But wait, that’s not all!  There are other very important reasons to move…frequently.  Would you like to slow the decline of your lung function?  I would.  Studies have not all shown improvements in lung function with exercise, but they have consistently shown that regular aerobic exercise (HR of 150 BPM for 20 minutes, 3 times/week) significantly slowed the rate of decline of lung function (Journal of Cystic Fibrosis 4 (2005) 7 – 26).

Like everyone else, when those of us with CF exercise, we increase our functional capacity.  This means we can do more with less energy.  This doesn’t sound like a big deal, but as lung function declines, efficiency becomes extremely important.  Improving functional capacity improves efficiency.

Do you like the feeling of shortness of breath?  It’s the worst, isn’t it?  Again, for unknown reasons, a regular exercise program including aerobic exercise diminishes the sensation of air hunger.  Many studies have shown this, both in CF and other types of COPD.

Hundreds of studies have shown that exercise improves quality of life in all people, including those with CF.

NOT EXERCISING IS A DEPRESSANT!  Do you really need something else to bum you out?

Exercise, especially weight bearing exercises such as walking, jogging and weight lifting can prevent the loss of bone density.  This is true for everyone.  The reason we care more is that we have SO many risk factors for bone loss; I don’t even want to list them all (it’s depressing, and this is NOT a depressing Boot Camp).  The good news is that we can help stem the tide of diminishing calcium stores.  We do have some control over this one.  We just have to do it.

Exercise improves bowel function.  Enough said.

Exercise improves appetite.  Therefore, you will eat more.  Therefore, it will be easier to keep weight on.

Weight lifting (resistance) exercise builds muscle mass.  This is true if you are a preadolescent.  This is true if you are 95 years old.  This is true even if your CFTR is messed up.  I know this from my fitness training and from personal experience.  This is ONE very visible aspect of your body that you have a say about!   It’s nice to be normal that way.  Try it!

Exercise (especially strengthening the back and stretching the front of the torso) will improve posture.  Improved posture can increase the amount of lung volume available for breathing.  This is significant.  You can also reduce back pain by making simple improvements in posture.

Once you get past the initial distress (when you aren’t used to moving), exercising actually feels good!  Don’t take my word for it, though.  Give it a 21-day try, and see if I’m right.

Convinced?  I hope so, and just to give you a little extra push, I am going to give you examples of easy do-at-home exercises to try during the Boot Camp.  I have created a YouTube Channel, and have demonstrations of several exercises you can do with your body weight only, with your stability ball, with the resistance tubes, and with a combination of the above.  I also have a short demo warm up which you should do before any work out.

The physical exercises I ask you to do during the boot camp include both aerobic and resistance exercises.  They both are extremely beneficial, and whenever I talk to someone with CF about a good exercise program, I include both.  Mobility and flexibility work are also important to include in a balanced program.


This is really a misnomer.  Right now, you are doing an aerobic activity by reading this article.   “Aerobic” just means you are using oxygen to create the energy to do what you are doing.  What we really mean when we refer to aerobic exercise (‘we’ being fitness professionals) is continuous, rhythmic movement of large muscle groups for an extended period of time, requiring an increased demand for oxygen.  This would include walking, jogging, swimming, jumping rope, biking, rowing, elliptical training, trampoline jumping, etc.  The list is limited only by your imagination.

The idea is to work hard enough to use your lungs…deeply.  Work hard enough that you have to take deep breaths.  The goal is to expand the lungs so much, that some air gets beyond the small mucus plugs in your tiny airways, and when you cough…well, you know.  Coughing is the goal.  Dying of exhaustion and air hunger is NOT!

On a scale of 1 to 10, where 1 is how you feel while sitting down watching television, and 10 is how you feel while sprinting as fast as you can away from an escaped tiger at a zoo, you want to be around a 6 (moderately hard, but easy enough that you can do it for a sustained period of time).  It doesn’t matter how fast you are going. What matters is that you FEEL an exertion level of about a 6 or so.  For some people, this may occur at a walk.  Others may have to break into a jog or a faster rate of whatever they are doing.  At first, you may only be capable of doing this for a few minutes.  That’s perfectly fine.  It should not be unpleasant!  As soon as it feels unpleasant, slow down.  There is nothing that kills motivation like physical discomfort. The goal is to work up to 20 to 30 minutes of continuous activity, where your “perceived exertion” is at a 6-7 of 10.

Does this mean you don’t need to do CPT?  No.  What about the vest?  Ask your doctor.  I have heard different answers to this question.  Personally, even though I exercise almost every day, I still continue to use the Vest.  I just don’t have a good reason NOT to do it.

It is nearly impossible to describe using words alone the proper way to do an exercise.  Given this, and given that this is the 21st century, I will use a bit of technology.  I’ve created a few YouTube videos showing some simple resistance exercises using a stability ball and resistance tubing.  The plan is to add more, of course, and since my new favorite toy is the “kettlebell,” I will likely demonstrate a few exercises with these as well.  The beauty of kettlebell exercises is that they work strength, flexibility, and cardiovascular fitness at the same time.  This takes efficiency to a new level.  More to follow.

The next post will discuss preparation for the next few weeks of Boot Camp.  Then, we’ll move on to DAY ONE.


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