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.

Mindfulness-Based Stress Reduction for People With Cystic Fibrosis

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

Have you ever thought it would be kind of cool to be able to meditate, but then a tiny little voice in your head would say, “Are you kidding?  Spend 30 minutes focusing on my breath?  I’d rather stick a needle in my eye!”

I’ve been there.

But then, 13 years ago, in the midst of one of the more stressful periods in my life, I signed up for a class called Mindfulness-Based Stress Reduction (MBSR).  It was an eight-week class that met weekly for two hours, and included one all day “retreat” toward the end of the class, where we practiced in silence what we had been working on over the previous weeks.  This was one of the best decisions of my life, and meditation has become one of the most effective tools I have as I continue to live a full and happy life with cystic fibrosis.

This class made such an impact on me, that I have now learned how to teach it.  The reason I took the time and spent the money for this training is that I want to teach others with CF how this simple practice can make a difficult and sometimes complicated life just a bit easier to handle.

I took the class (twice) in person (both times in hospitals), and co-taught another eight-week session with my mentor in a hospital in San Jose.  Why meditate in hospitals, you might ask?

Actually, the MBSR program originated at the Stress Reduction Clinic, which was founded in 1979 at the University of Massachusetts Medical Center by Jon Kabat-Zinn. Now, it exists in over 250 medical centers across this country as well as in numerous locations internationally.  Consistently, graduates of the program report:

• Coping more effectively with both short- and long-term stress
• Greater self-respect, energy, and enthusiasm for life
• Lasting improvements in physical and psychological well-being

You know that having cystic fibrosis does not define you. Yet, it can be hard to find yourself in the midst of treatments, medications, doctor visits, hospital stays, and constant concern over that magic number, the FEV1. Having a chronic illness like cystic fibrosis is stressful.  This is just a fact of life.

What is often forgotten is that there is much more that is right about us than is wrong! Using the techniques taught in Mindfulness-Based Stress Reduction, we can develop skills that will help us stay afloat in times of chaos, and get more in touch with aspects of ourselves that are untouched by problems with an epithelial chloride channel!

Common Questions

What is Mindfulness?

Mindfulness is simply purposefully paying attention to what is happening in the present moment, without judgment. The present moment is where life unfolds, and it is only here where choice is possible. By cultivating the practice of mindfulness, you can begin to see where you tend to be on “autopilot,” and learn to use compassion and courage to make conscious choices about how you allow life to unfold, rather than feeling completely out of control. Mindfulness practice is ideal for cultivating greater awareness of the interconnection of mind and body, as well as of the ways our unconscious thoughts, feelings, and behaviors can undermine emotional and physical health.

I can’t focus on my breath…How can I meditate?

The good news is that the leader of the class (me) also has CF and understands this dilemma.  There are other ways to use mindfulness to better cope with stress.  One does not need to focus on the breath.  There are many other ways to anchor the mind.  Breath is just a very easy one to teach, and it’s always there.  Because I understand that attention to the breath can provoke anxiety, we will explore other ideas.

I can’t go to a class.  I have a multi-resistant bug. Or, the corollary:  I don’t want to get multi-resistant bug.

The best news yet:  This class takes place in a virtual classroom.  All you need to attend is a computer with Internet access.  If you would like to be able to speak (and this is encouraged), a computer headset is recommended.

What are the details?

This class will be an 8-week intensive training in mindfulness based on ancient healing practices. In addition to the weekly classes, there will be one full day retreat scheduled toward the end of the course.  The price of the course is $350, but no one will be turned away for lack of ability to pay.  If you would like a scholarship, please contact Julie Desch at Julie@newdaywell.org.

Registration can be completed here.

The mind and body are linked. We know this now through innumerable well-designed scientific studies, and we are learning more every day about how this works. Don’t kid yourself into thinking that you have no input into your health simply because your disease is genetic.  When you learn the practice of mindfulness, you begin to experience exactly what this means, and with that understanding, you can begin to see some wiggle-room around unhealthy habits of the body and mind.

Give it a try by registering now

Class description

Class schedule

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Operation Exacerbation

Rule Number One that I hear myself telling people who are bummed out about their illness, whatever it is, is to remember, “there is more right with you than wrong with you.“

And that’s true, right?  Think about it, by some miracle you are here on this earth, breathing, most likely able to walk around, enjoy food, listen to good music, pet your dog, watch Survivor…

Why is that?  Because most of the 100 trillion cells in the body, each of which are probably performing thousands of events per second, are actually doing their jobs perfectly well right now.  If not; well, you would not likely be reading this.

Now I’m not preaching here.  I am mostly writing this for my own edification, because I just learned that I am now infected with MRSA in my lungs.  I really can’t convey in words what happened in my consciousness when I learned of this last week.  Maybe you know the feeling that really bad news carries with it.  The sinking feeling in the pit of the stomach, the tight chest and throat, the heart racing and the blood draining from seemingly everywhere…  Sh_t!

Then the anger, and the self-pity arrive.  Sh_t (again)!  Why me, why now?  This is a REALLY bad time for this.  I’ve got plans, Universe!

And then, the tears.

So, now I’m officially a CF Pariah.  Gown, glove and mask everyone…here comes Julie.  Man, I’m pissed.  And of course, really what I am is scared.  What does this mean?  Is my CF going to get worse?  Will the freakin IV’s even work this time?

So, I allowed this to go on for a couple of hours.  Then, I was better.  Then, it came back with a full and serious vengeance over several days.  And now, finally, I’ve decided to respond instead of reacting.  Or at least…to try.

The first thing that came to my mind was to write the post I was going to write before the fateful telephone call.  It seemed to me that writing about having a “positive exacerbation” could only be credible if it were to be created during an exacerbation.

So, even though this is a slightly unusual (for me) situation, it is most certainly a “CF adverse event” and just as certainly would be best handled with a positive attitude.

Here are a few things I do to make my three weeks of IV’s…my “home vacation:”

1) First, since I can’t exercise strenuously, I don’t.  I legitimately and compassionately stop pushing myself.  A gentle walk every day that I feel like it is about as hard as I’ll push these days.  After the port goes in and the PICC comes out today, my arms will be free at last, free at last.  So as I feel stronger…I’m back to those kettlebells!  Have I told you about my favorite new exercise?  Something else to post about.

2) I have incredible friends who have been incredibly kind.  I will appreciate them every day, in some way.  By telling them what they mean to me, I will add positive energy to their world and mine.

3) Sometimes it takes a real blow to the illusion of stability to wake me up.  This has been a great one.  I will resolve to appreciate what is good in my life.  The best way I’ve done that in the past is to keep a gratitude journal, and vow to write in it every night three good things that happened that day.

4) I have a post that I have been writing in my head for weeks now about the growing importance of meditation in my life.  I have been trying to figure out how to stress this without sounding like a preacher…hence the silence about meditation.  But it has been SO key for me this last week, that I will write this post.  It will be the next one.  I will pour my soul into it, for both myself and for those two or three readers I have:-).

So if you like this plan, or if you have some suggestions, or if you’d like to share how you deal with your own “operation exacerbation,” please leave a comment!

Hot flashes, Hand-Me-Downs, and “Honey, did you see me take my ___________ today?”

I don’t know about you, but I’m getting older.  Last I checked, I was well into living my 50th year.  Now, nobody has actually ever told me, “Julie, you are not likely to live to be 50,” but having not lived in a cave all of my life, I have received this message loud and clear.  So what am I doing here?

Here, for example, are a few random things I hadn’t planned on:

1) Hot flashes and menopause:  Isn’t it weird that every time I put on my therapy Vest, I have a hot flash?  I don’t think they were designed with this in mind.

2) Wearing hand me down jeans that used to belong to my son:  It’s true.  My 12 year old son is now giving me his outgrown jeans…and they are too big.  I’m trying to grow into them.

3) Forgetting whether or not I have actually done pretty important things:  Did I take that pill?  Did I inhale Advair?  ”Honey, did you see me inhale this?”  This is truly frightening.

4) Wondering with fear and fascination what will happen if I actually outlive my disability payment:  I don’t think the insurance company was expecting this either.

5) Not being able to see whether the needle is actually going to hit the tip of the  Colistin vial:  Are they making that bulls-eye smaller, or is it just me?

6) Getting so used to the ringing in my ears, that is seems like part of the radio background:  Oh, the years and years of tobramycin….

7) Routinely wondering if it is possible to lose one’s colon down the toilet:  Ok, this is a bit graphic.  I don’t know what the magic number of hours logged will be, but at some point, don’t you think gravity is going to win?

8)  Getting too “old” to run (read: low back and knee pains):  I thought the lungs were supposed to go first.

9) Making more cracking and moaning sounds getting out of bed in the am than my 16 yr old border collie as we hobble to the kitchen to make coffee.

10) Wondering if I might outlive yet another dog:  I don’t know which to wish for.

11) Living long enough that those foolish years of laying out in the sun on aluminum foil  lathered in baby oil has resulted in my wrinkles having wrinkles:  Who knew that shins could get wrinkled?

12) Needing a screening colonoscopy:  Of course, if we wait long enough (see 7 above), we can probably just examine it directly:-)

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