Saline Chronicles: 1 Can you floss just one tooth?

by on February 27, 2014
in general



I had what I thought was a brilliant idea that came to me in two parts this morning.

I’ve been having problems with motivating myself to write this blog.  Now let me assure you right now that I don’t think for one minute that what I write is so important that I need to inundate you daily in order to make the world a better place.  My motivation is much more selfish than that.

I like to write.  I feel good after I’ve written something and hit publish (usually).  It makes me happy to write.  At this age, I feel like I should do what makes me happy, because…you never know, right?  So I asked myself the same question I ask of my clients who want to start a new habit:  What is the first baby step that I can take to make writing a habit?

Clearly, I have a platform here already made.  Nobody reads it, but who cares?  The easiest thing in the world would be to write a short post regularly…and by regularly I mean nearly daily when I am not traveling.  Did you notice those two caveats that my subconscious mind slipped in there?   “Nearly” and “when I’m not traveling…”

Ok, daily.  Damn you, subconscious mind.  Already trying to sabotage my plan…

I’ve made this promise before and not kept it.  The write every day plan, I mean. But here is what I just figured out:  I DON’T HAVE TO HIT PUBLISH!

That was epiphany number one.

Epiphany number two came when I thought about something I read yesterday about how to create the very good habit of flossing one’s teeth on daily basis.  It is powerful in its simplicity:  commit to flossing one tooth.  Who can’t floss one tooth?  Seriously…you just wrap the stuff tightly around your finger, cutting off all circulation, and stand in front of a mirror.  Boom, you are done.

There is hidden magic in this technique, though.  In a few days, I will bet a million dollars that I don’t have that you are flossing more than one tooth.  In all likelihood, after a few weeks, all of your teeth are getting a daily scrubbing and your dentist and cardiologist are very happy with you.

Why does this happen?  Because you set yourself up for success by making it so easy you cannot fail.  There is no pressure. You are tricking your brain into getting over the mental inertia that presents the biggest obstacle to forming a habit.  You go through the first few motions…going into the bathroom, getting out the floss, and beginning…without a thought.  Then, while you are standing there, you just start to do more.  Why not?  It doesn’t hurt.  It’s easy. It’s a good chance to daydream.

My epiphany number two was to create the easiest way possible to blog.  As someone with CF, you all probably know the ritual that fills my morning:  long periods of treatments, inhaling stuff, shaking with the Vest, inhaling more stuff, taking pills, eating high fat stuff, taking more pills, dealing with the consequences of eating high fat stuff that didn’t necessarily digest well….and then doing the normal morning things that everyone does.  This takes time…a lot of it.

I usually entertain myself by getting drawn into the Black Hole of the Interwebs and hours pass by getting nothing of consequence done…other than “pulmonary toilette” as it is called in medspeak.

My “floss one tooth” idea is to write a short post while inhaling stuff.  And by “short” I mean, write at least a one paragraph post while inhaling 7% hypertonic saline, which I do without fail every…single…day.  Hence the name, “saline chronicles.”  I tried to do this before, but I got all freaked out, thinking “how can I possibly have something good to write every day?”  Enter epiphany number one,  DON’T HIT PUBLISH.

So here it is. This time I will hit publish.  I’m sorry.  But I feel that perhaps this will provide the accountability I need.  If both of you out there remind me occasionally about this idea, I will keep it up.  Thanks.  I am happy now.

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by on February 25, 2014
in general

Fishing with Mo

Totally in the zone. Where are those fish anyway?

A great soul has left our earth.  As many of you know, I have quite a soft spot in my heart for Border Collies.  Mo Ringel was (in my heart) second only to one—Cisco Desch—in the heated competition for best Border Collie ever.

Borders are more intelligent than humans.  Any intelligent human knows this.  Mo was so smart that she only let those who were in her pack touch her.  Seriously.  And even her pack members had to check the look in her eyes to confirm her permission for a simple pet. This was one smart dog.  How many times have you been touched, physically or emotionally, by someone without your permission which resulted in a good outcome?  Not many. Mo Ringel was (in my heart) second only to one—Cisco Desch—in the heated competition for best Border Collie ever.

The mantra at Mo’s house (and it was most definitely her house) was, “DON’T TOUCH THE DOG.”  I only disobeyed this order once.  That’s all it took.  From that point on, Mo and I had an understanding…I could sit next to her, talk to her, coo coo her, and we were good.  In fact, when I followed her rules, she even came to find me a few times.  Others were not so lucky.  I am almost ashamed to admit that on visits to Mo’s house, my own children seemed to think it a game to see who could touch Mo first without getting bit.  This only worked on the boat, when Mo was so busy biting the wake that she didn’t notice the surreptitious pokes by my deviant boys.

And this brings me to the greatest dog owning family ever…the Ringels.  How many people do you think would keep a dog, in fact, shower said dog with love and lake trips and raft rides and golf ball chases after numerous veterinarians tried to convince them to put Mo “down”  due to her somewhat unusual social skills.  When just to have Mo checked out a a vet meant cajoling her into the car (without touching her, of course), and then forking over the cash for general anesthesia for a simple check up, or shot, or whatever?  This was true love, and it went in all directions in that family.

Fourteen years of love.  You can’t beat that.  Now Mo and Cisco are frolicking somewhere in a parallel universe.  I just hope Cisco doesn’t touch her.  RIP Mo Ringel.


The girl loved her boat!

The girl loved her boat!

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Do Me A Favor…

by on October 14, 2013
in general

Hello, readers ‘o blog.

I’ve been working on a project that I really think will be of benefit to the CF community.

Imagine you can go anywhere for medical care, at any time of the day, and ensure that the people treating you know exactly how to take care of you. Imagine you can also directly help the medical researchers that are trying to help you….and accelerate the introduction of new therapies.

This will hopefully be the end result of the project, but we need your help:

Please go to the following link and fill out a 2 question survey.  Your input will help immensely.  It should only take a couple of minutes:

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The Hidden Value of a Ruptured Disk

Months ago, I was very inspired by a blog post I read from the Unknown Cystic.  If you don’t know him, I highly recommend that you check out his blog.  I’m not sure how he did this with a bag over his head, but he built a treadmill desk, and proceeded to log miles and miles each day as he toiled at his at home job.  This little nugget percolated through my brain over the summer, as I tried to figure out how to do something similar.

Then, the back thing happened, and suddenly it hurt to sit down for long periods of time.  So a percolating idea became much more urgent.  As I have the carpentry skills of a basset hound, and not a tool more complex than a phillips screw driver (which one is that?), I went the pathetically lazy route and bought the damn thing–other than the treadmill, which I had.  If you read Unknown Cystic’s articles, you will see how he did it and be much more impressed.

Here’s all I had to do:

1) Convince my teenage sons to bring the treadmill inside for me.  This was not as easy as you might think, but eventually they caved and proved that they were much stronger than their mother.

2) Order a TrekDesk on Amazon.  Ching.

3) Drag the 80 pound box through your house to office.  This is not recommended if you have a herniated disk, but boys were unavailable.

4) Assemble desk.  This is supposed to be easy, and I guess since I was able to do it, it must be.

5) Lift desk up and over treadmill–again, not recommended with disk herniation.

6) Start walking.  Get a FitBit or something like it, and try to create a new record every day.

7) Say goodbye to back pain and hello to foot and leg fatigue (but this gets better)

my new officespace

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What Is Your Mindset?

growth mindsetI recently heard Carol Dweck, a research psychologist at Stanford, give a talk about her book, Mindset: The New Psychology of Success, and the number of “ah ha” moments I had prompted me to immediately order the book.  Dweck’s research interest is in motivation and what makes people succeed.  She has developed a fascinating theory that compares what she terms a “fixed” mindset to a “growth” mindset.  As you might guess, having a growth mindset is a good idea, and I’ve begun to wonder how this theory might apply to living with a health challenge such as CF.

First, some definitions:  A fixed mindset is when people believe that their basic qualities such as talent, intelligence and other abilities are fixed; that they are born with them and they essentially do not change over a lifetime.  Alternately, a growth mindset is the belief that these basic qualities can change over the years given diligent attention, practice, mentorship, etc. One way to tell if a person lives from mainly a growth mindset vs. a fixed one is to explore what drives them to success (or not).

What drives someone with a fixed mindset is fear.  They have been told all their lives that they are “smart” or “musical” or “artistic” or a “natural leader,” and they are mortally afraid that if they mess up, this suddenly means they are stupid, or not talented after all.  They fear mistakes, and the result is they won’t do what it takes to grow, and learn more. The focus is on the outcome, on looking brilliant and not letting people see anything that belies their perfect reputation.  It sounds stressful, if you ask me. What drives the individual with a growth mindset is challenge.  They enjoy the process of doing something, anything, because the possibility exists that they might improve or learn something new.  Mistakes are seen as part of the process, an important step in learning, and not as failure.

Much of Dweck’s research has focused on children and what happens when children are praised for abilities or talent vs. being praised for diligent work and resilience…the process of how a child learns and achieves as opposed to the end results.  Surprisingly, children who are consistently praised and told they are smart or talented at this or that develop fixed mindsets.  They begin to worry about doing the next thing, afraid they won’t perform up to standards set for them. They don’t want to take on hard jobs, finding it less stressful to just do what they are good at.  They don’t take risks.  They get defensive when they make mistakes, and may blame others.

But children who are praised for their effort and told that they worked hard which is a great thing, learn that the working hard is what is important.  They develop a growth mindset, and are excited to take on new challenges.  They are not afraid of making a mistake.  They aren’t defined by their talents, nor do they believe that talents and intelligence can’t be improved upon with hard work.

The first thing I thought when I read this is, “Oh man, did I mess my kids up?”  The next thing was, “Yup, that was me growing up.  That ‘A’ made me happy for about 2 nanoseconds before I was worrying about how to get the next one.” Fortunately, a growth mindset can be fostered at any time in life, as we’ll see below.

All of this musing eventually led me to consider how mindset might affect one’s health.  For example, let’s say a young child is born with cystic fibrosis, and told by parents and doctors that they are sick, and need to do x, y, and z just to stay alive.  Of course, the kid does need to learn that it is important to do treatments, exercise, eat right, and do the myriad of things necessary to stay healthy and it would be appropriate to praise the child for doing these things regularly.  But this is praising action, praising the hard work required to stay healthy. What wouldn’t be such a good thing would be to praise the kid for being healthy…because then as soon as she is not healthy, she has failed.

Now, I don’t really think parents and doctors routinely say “you are sick and are going to die if you don’t do this” to small children and parents of kids with CF (at least I hope not).  And I think most parents know to praise their kids for taking care of themselves. Where mindset becomes more relevant to us is during adolescence and young adulthood (and even “old” adulthood these days). A teen or young adult who has fully assumed all responsibility for health maintenance might very well suffer if he/she has a fixed mindset around health.  And let’s face it, when you continue to get sick, even though you do everything you can to stay healthy, it’s easy to develop the attitude that “CF is going to kill me, no matter what I do.”  Then it’s easy to start saying, “screw it, what is the point?” and start to slip in health maintenance activities.

Decisions about the future can definitely be affected by such a mindset.  This can go both ways.  Someone might have an “I’m going to die anyway,” and make really stupid, risky decisions like taking up smoking or becoming a firefighter.  Someone else might be so afraid of getting sick that they won’t try anything that stretches their routine. It’s tricky to develop a growth mindset when you have CF, but I know many people who have done it.  I’ll list the steps according to Dr. Dweck’s website, and then give some examples of how I’ve seen this work.

Learn to hear your fixed mindset “voice”

Here’s what mine has said to me twenty-eight years ago:  “Your sister, Kathy, died when she was thirty-one.  You are now 24. Why are you wasting the last seven years of your life in medical school and residency”?  This one was a doozy and nearly caused me to quit medical school.  Figuring out where your mindset might be fixed and limiting you is not as simple as it sounds, especially when you live with CF.  It isn’t “fixed” in a negative way if you are cautious about doing things that might be a risk to your health.  Yet it is not a good idea to think, “I’ll never be able to exercise, because I’ve never found anything that I like or am comfortable doing.”  That is fixed.  That is not even open to trying.  Remember, if you can breathe, you can exercise.

Recognize that you have a choice

When Ana Stenzel was training for the Seattle half-marathon in 2006, she began to develop shortness of breath, only to discover that she was starting to reject her first set of lungs transplanted years before.  I can’t even begin to fathom the emotions she must have felt, knowing that this was chronic rejection which could not be remedied.  At the time of the race, she was extremely symptomatic, and there was no way she could jog any part of it (our original plan was to walk/jog the race).  Any person in her shoes would have been completely justified to say, “not this time, I will watch and cheer Isa on.” But Ana recognized that she had a choice. She could modify her original expectations, and walk the 13.1 miles.  She didn’t have to run any of it.  So she did just that, and got to experience the thrill of being in a half-marathon.  The time didn’t matter.  The method didn’t matter.  It was the experience that she decided was important to her, and she was going to have it, rejection be damned.  You always have a choice about how you frame a situation to yourself.

Talk back to it with a growth mindset voice

My friend E’s (I’ll keep her anonymous since she didn’t give me permission to use her name) lungs were failing.  She had a horrible year with infection after infection and was in the hospital more than out of it.  She began to need to use supplemental oxygen, and was very self-conscious about using it outside her house at first.  I don’t know the inner workings of her mind, but I would venture to guess her “fixed” mindset might have said to go out and be seen with an O2 tank is admitting failure.  The “fixed” voice might have whispered to her that O2 meant CF had won the battle, and she was on an inevitable downslide.  To go out in public was to verify that as the truth.  But she must have talked back to that voice.  As she realized that she could do so much more with the aid of oxygen, she wore it to walk with, both on her treadmill at home, and around the neighborhood.  Her inner dialogue might have sounded like this:

(fixed)  “You can’t let them see you like this.”

(growth)  “I need to walk.  I need to get stronger.  Even if I need a transplant, I have to be strong for that.”

(fixed)  “But this means CF has won.”

(growth)  “Shut up.  CF is not winning.  I am getting stronger despite crappy lungs right now, and that requires oxygen.  I am not quitting.”

Talk back.  A voice is just a voice.  Just because you think it doesn’t make it true.

Take the growth mindset action

After you practice steps 1 through 3 above, this part will come naturally.  As you begin to recognize your fixed ideas about your health and what it means to have CF, you can practice seeing things from a growth viewpoint.  I reflected on my irrationally emotional decision to quit medical school, and took the growth pathway to going back for a semester just to see if things got better.  They did.

Ana chose the experience of the half-marathon over worrying about time or mode of travel.  She finished, and went on to a live well through a second transplant, a book and a documentary, a job as a genetic counselor, and gave immeasurable gifts of love and presence to the CF and transplant communities for many, many years.

E chose to listen to her growth voice.  She stayed positive and exercised as she waited for her phone to ring with the news that her new lungs were waiting for her.  Now that she has her new lungs, I’m guessing her growth voice is screaming at her with excitement as she gets stronger and stronger.

As you practice listening for it, the growth mindset voice becomes loud and clear.  Ignoring it will become…uncomfortable.  You might still stay in fixed mode at times, but you will know that there is another choice.


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