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:

Course description: http://www.emindful.com/course_descriptions/MBSRCFCD.html
Schedule: http://www.emindful.com/schedules/MBSRCFS.html
Direct registration: https://www.regonline.com/MBSR-Cystic-Fibrosis-Patients
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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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Inner Strength

Wee Haw Schnaw
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.

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Sick and Happy Takes on New Meaning

by on March 17, 2009
in general

I am going to be the first ever to blog about the negative effects of happiness in CF.  The following is an excerpt from an article from Stanford Medicine, published yesterday (the emphasis is mine).  In brief, the article reports the discovery of an exaggerated white blood cell response to inflammatory signals leading to lung destruction in CF lungs:

So what are the live neutrophils doing in patients’ lungs? The new findings surprised Tirouvanziam’s team. After collecting fresh neutrophils from cystic fibrosis patients’ sputum and analyzing them with fluorescence-activated cell sorting, the team discovered that signals from the patients’ lung tissue were reprogramming live neutrophils with conflicting messages. The first set of signals switches on what Tirouvanziam calls “an ancient happiness pathway” — a chain of commands that tell the neutrophils that nutrients are plentiful, and that it’s a good time to translate the cell’s library of genes into new protein. The second pathway is a cellular alarm system associated with inflammation and stress.

“They’re receiving a lot of signals at same time, and we think the happiness signals are messing them up completely,” Tirouvanziam said.

His team now suspects the inappropriate activation of the “happiness signal” — the molecular target of rapamycin, or mTOR, cell signaling pathway — may trigger neutrophils to release large quantities of human neutrophil elastase, the enzyme that destroys the elastic fiber of lung tissue. In healthy individuals, neutrophils never release destructive human neutrophil elastase into nearby tissue.

So maybe Sick and Happy should now be called Sick because I’m Too Happy????

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A very interesting study was done in 2002, looking at what made college kids happy(1).  Now, I know what you are thinking.  All college kids are happy!  Why wouldn’t they be?  They have no responsibility.  They get to wake up when they want.  They are free from parental control for the first time in their lives.  And then, there are the fraternity parties…

Not so, apparently.  Using multiple assessments, 222 college kids were divided into groups that were “very happy,” “average,” and “very unhappy.”  Countless studies have of course been done on unhappy people with various psychopathologies, but this was the first to focus on very happy people.  The conclusions were fascinating.

Several variables were assessed, including things like social relationships, personality and psychopathology, the perception of wealth, number of objective positive and negative events they had experienced, grade point average, physical attractiveness (rated by coders by looking at pictures), use of tobacco and alcohol, time spent sleeping, watching television, exercising and participating in religious activities.  All of this data was collected over about 50 days by having the subjects do daily logs.

The researchers were looking for the key(s) to happiness…what variable(s), if any, would be either sufficient or necessary (or both) to put someone in the very happy group?  The term sufficient in this case would mean that all people who had that variable were “very happy.”  Necessary would apply to a variable if virtually every person in the very happy group possessed the variable.  Are you with me?

Now with that very simplified explanation of the study done, on with the results.  Sadly, NONE of the variables evaluated were “sufficient.”  There is no magic key to happiness…at least, not in this study.

However, a few variables were found to be necessary conditions for high happiness…the one that this article is concerned with is that “very happy people have rich and satisfying relationships and spend little time alone relative to average people.”  It also helps to not be neurotic or have much psychopathology (i.e. depression), and to be an extrovert.

Bummer.  So there is nothing magic to do or get that will, by itself, provide happiness.  But, trying to manipulate the variables that are necessary to be happy is a good way to improve your odds, right?  Of the four (lack of neurosis, minimal psychopathology, extroversion, and rich social relationships), the easiest one to work on is the last.

Happiness does not appear to occur without rich social relationships.

Hence, the  “Y” rule in NOTDEADYET.  You are not alone!

So, don’t be a recluse.  Reading blogs and commenting is fun and encouraged (hint), but is not sufficient to build rich personal relationships.  What is necessary is to connect with others…in person.  And this applies even more, I think, to people living with the stress and inconvenience of chronic illness.

When you don’t feel well, it is very easy to hole up and not be social. I get it.  You don’t look your best.  You don’t feel your best.  You don’t have energy to be social.  You don’t want other people to think they need to help you.  It’s just easier to curl up with your dogs and watch Keith Olbermann!

But therein lies the problem.  Hanging out alone keeps you mired in yourself.  It becomes easy to feel sorry for yourself, jealous of others, and just generally pissed off that you don’t feel great.  And there is no one there to tell you differently!  You get no other perspective.

The next question becomes, “How do I just start being social when I’ve never been before?”

It starts with calling someone.  At first, maybe it will just be family members.  Connecting more frequently with them is a great step in the right direction.  Over time, you might be emboldened enough to call a friend to set up a date for coffee or lunch.  Then, maybe you can make a goal to call a different friend once a week.  Then…you get it.  Small steps.  But necessary ones!

1) Diener, E., Seligman, M., (2002). Very Happy People. Psychological Research, 13(1), 81-84.

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