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

.

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:-)

Inner Strength

If you can start the day without caffeine or pep pills,

If you can be cheerful, ignoring aches and pains,

If you can resist complaining and boring people with your troubles,

If you can eat the same food everyday and be grateful for it,

If you can understand when loved ones are too busy to give you time,

If you can overlook when people take things out on you when,
through no fault of yours, something goes wrong,

If you can take criticism and blame without resentment,

If you can face the worlds without lies and deceit,

If you can conquer tension without medical help,

If you can relax without liquor, if you can sleep without the aid of drugs,

If you can do of all these things,

Then you are probably the family dog.

Control Trumps Fear When it Comes to Adherence to Exercise in Cystic Fibrosis

I’m getting a lot of ideas for posts as I prepare for this talk in a couple of weeks at the NACFC in Minneapolis.  I am speaking about motivation and exercise, one of my favorite subjects, and am quite happy to be doing it.

Today I reviewed an article published in Thorax 2004; 59: 1074-80, by Moorcraft et al, entitled Individualized Unsupervised Exercise Training in Adults with Cystic Fibrosis: a 1 year randomized controlled trial. Here are a few reasons why this is a well designed study and one to believe:  1) it is (in CF terms) a pretty long term study.  Most others are only weeks to a few months in duration. 2) It was randomized, a short-fall of many other exercise in CF studies. 3) After an initial training session, it was unsupervised and the exercises (though structured by a trainer) were done at home–so the positive results are  good news about adherence and sustainability of a program.  The patients were, however, given frequent contact by phone and/or clinic and were actively encouraged and motivated to continue.

The results were indeed positive.  After a year, a significant training effect was shown in the training group and there was a lesser decline in lung function in those trained when compared to controls. But, as important as that is, that is not why I am writing this.  The most important point of the article to me was in the summary, where the authors state:

“Every effort must be made to adapt the exercise to fulfill the wishes of the patients and integrate it with their lifestyle.  This study shows that benefit can be obtained with an individualized home-based programme.  In the long term, motivation must be sustained by the individual and the clinician must strive to engender an exercise habit.  A flexible approach to encouraging exercise and an enthusiastic approach from the staff should not be underestimated.  A feature that favours exercise adherence in CF is that the patients perceive it as an area over which they have control and that, unlike other treatments, fear of their disease does not drive adherence to exercise (my emphasis).  Instead, they have a positive outlook on exercise regarding it as a normal activity which they can enjoy.”

I don’t know about you, but I think that fear sucks.  It doesn’t feel good.  It incapacitates me when it comes to rational thinking, and over the long haul, it frankly shrinks my brain.  It is true that sometimes fear works to motivate.  If that weren’t true, I probably wouldn’t have made that phone call to my doctor when I coughed up blood.  I feared for my life, and a phone call was made.  Fear works in acute situations.  It is the flight aspect in the fight or flight response to the mountain lion on the bike path.  Ok, bad analogy.

The point is that as a long term motivator, fear is a BAD choice.  Chronic fear leads to increased stress hormones which lead to depression and brain shrinkage.  Neither helps with adherence to any kind of program, let alone one where you must insert significant energy, as in an exercise habit.

Control, however…now THAT is powerful.  To me, seeing and feeling my body respond to exercise over the long haul is not so much about control as it is empowerment.  I feel actual empowerment over at least part of my body…and this is not a common feeling for one living with a disease such as cystic fibrosis.  This empowerment leads to confidence in other areas as well, and makes one think twice about negating the effects of all that work by, for instance, missing treatments.

Thinking about going to the gym or going out for a run just like any other “normal” person makes me feel more “normal.”

Now think about a kid…an adolescent with body image issues and control issues who is angry and in denial about living with CF.  How helpful do you think a little dose of empowerment and normalcy might be?  Trying to instill a little fear into him or her would lead one direction…the one you don’t want to go.  Helping them to feel good about how well they respond to an exercise program and encouraging them to exercise because it is what we ALL should do…that works!

Posture For the Sick and Happy

A few days ago, I uploaded the above video to YouTube.  I think posture is an incredibly important thing to think about when living with a pulmonary disease, so I thought it deserved a blog post.

Think about it:  When you have cystic fibrosis, or any other pulmonary disease, every single alveolus is precious (“alveolus” is medical speak for the tiny little air sac that, together with it’s millions of comrades, comprise the lung and allow for oxygen exchange–I like to think like a doctor sometimes).

As we get older, (happily, we all are now, aren’t we) there are two forces working against our lungs–gravity, and CF.  We tend to think that we have little control over either, but we do!  I write all the time about how we can positively influence our health by controlling what we can about CF.  We can do our treatments.  We can eat nutritiously.  We can exercise religiously.  We can get enough sleep.  We can make sure we go to all of our clinic appointments….etc.

Today, my focus is on how to control gravity!  Really.

Now mind you, I like gravity.  It does many very positive things!  It would be quite a chore to sit here and type without the assistance of gravity.  But, gravity can wreak havoc on your body if you don’t learn to use it properly.

Huh?

Our bodies were designed by a genius(es…who knows?).  The bottom line is that our bones, muscles, tendons and ligaments all start out aligned to oppose gravity perfectly…until we screw it up.  As I sit and type right now, my shoulders are rounded, my upper back is hunched over my computer, and my chin is jutted out over my chest.  I know that’s sort of a scary image, but stick with me here.

Look around.  Isn’t just about everyone assuming that position?  It doesn’t just happen when typing or sitting at a computer all day.  We gravitate unconsciously to this position  when we play video games (watch your kids do this for a good shock), when we drive, when we play poker, when we slouch on the couch, you name it.  It happens as we rush from one thing to the next.  Isn’t your chin usually the first thing to enter the room?  There are opportunities for this posture all day long!  Over time–and not that much time– our default position consists of forward rounded shoulders, hunched over upper backs, and forward jutting chins.  Compensating for all of this often comes a sway-back position of the lumbar spine.  Suddenly, gravity is our arch enemy.

When you throw your body into this position, the muscles, ligaments and tendons  of your back and neck HAVE to work overtime to simply keep you upright.  These poor muscles become chronically overworked…and they let you know it.  Slowly, the muscles of your upper back become stretched to a position that is not optimal, and they are thus weakened.  At the same time, the muscles of the front of your shoulders and chest, low back and hip flexors (remember that sway back thing?) becomes tight and shorter than their optimal length, thus weakened.  So, front and back muscles are weak, and working over time to keep you from falling on your face.

Ok, now throw in a chronic cough.  Does your back and chest wall  go into spasm just thinking about this?  Now you understand REASON ONE for establishing good posture when you have CF.

Now for REASON TWO:  Conjure up that image again, the one of the rounded shoulders, and slumped upper back.  Do you think it is possible to take a full breath using all available lung tissue when in this position?  Not a chance.  You  can use most of your upper lungs when you are collapsed that way.

It is estimated that poor posture can rob you of __% of lung tissue.  Now, I don’t know about you, but I need every bit of my lung tissue with every breath I take.  I can’t afford the improper effects of gravity1

So watch the video, and try to incorporate at least one or two of these exercises every day.  They aren’t hard, and they don’t take much time.  They will slowly work to strengthen and shorten those overstretched back muscles, and stretch and strengthen those tight chest and shoulder muscles.  The result will be that you will be able to pull your shoulder blades back and down, thus opening your chest and allowing for full expansion of your lungs.

The next trick will be actually remembering to do this!  I have some tricks for this, too.  Watch for my “mindful breathing intervals” in a blog post coming to you soon!

« Previous Page — Next Page »