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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Shifting focus….I was thinking about ports the other day.  Central ports…you know the ones.  The things we hate to think about needing, because it means we need antibiotics frequently enough to justify the risk of an indwelling central line.  A central port provides immediate and easy access for administration of life saving medication as we watch our lung function diminish.  I don’t know about you, but I have always had a visceral reaction to the idea that I may need such a port someday.

So when my partner mentioned the other day that maybe I should consider getting a port, imagine my surprise when my immediate thoughts  (really) were about Tolle, and how “port” and “portal” clearly come from the same root.  So now I’ve looked it up and, sure enough, the Latin root, porta, means “gate.” Tolle’s portals are gates to the Now, and a central port is a gate to, well, your heart and circulatory system.  The next thoughts I had were about the bright side of having a central port. In other words, I didn’t freak out.

There are definite pros to having a port.  No more PICC lines, for one!  My PICC’s always have to go into the right arm (clot in the left–from a PICC, of course), and always have to be put in by Interventional Radiology (I love those guys, but really…it’s another appointment, it’s more radiation, and they SEW the sucker in so it’s hard to pull out yourself:-)).  Not only that, but as you know, you can’t lift weights when you have a PICC (did I mention the clot in my left arm?).  So no PICC, means no three week layoff from one of my favorite ways to stay in shape.

Maybe it’s my age.  Maybe it’s wanting things to be simpler.  Maybe this just means I don’t care as much about what “other people will think.”  But I’ve been thinking about it in a very “accepting” kind of way, and will likely talk with my doctor about this the next time I need IV’s.  (He’ll probably say, “Are you crazy?”)

Which brings me back to Tolle.  Full circle.  Maybe a central port could be viewed as a sort of metaphor for a “portal” to Acceptance-with-a-capital-A.  There’s no denying or fighting the fact that the lungs are needing some serious help when you submit to a port.  It would be a daily visible reminder of my mortality staring back at me in the mirror each day.  It would be hard to ignore evidence like that.  Still, I’m not freaking out for some reason…

I’m liking this metaphor.

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This one was by Joseph Goldstein, who is a Buddhist mindfulness meditation teacher. I do this a lot these days.

Mr. Goldstein must have been reading my mind…that’s all I can say.  I was inwardly lamenting the fact that this walk was the first I had moved my butt in four days, as I had come down with some weird virus which seemed to have settled smack in the middle of my left lung.  Not only did it hurt to breathe still, but my scheduled Day 1 this week of a research study where I would take an exciting new drug was definitely looking unlikely.  Poor me… And the Packers lost, to boot.

Then, I heard a story about Henry David Thoreau.  Why was a Buddhist teacher talking about Thoreau?  Well, that is a long story, but in short, the podcast was about contemplating things that would “turn the mind toward the Dharma.”  Basically, it was a very good talk on impermanence.  But I digress…back to Thoreau.

It turns out that Thoreau died at 44, of tuberculosis.  I’m thinking he probably had a bit of chest pain, among other things.  In the podcast, Goldstein quoted Thoreau as saying something so cool that I came home and googled it immediately.  Sure enough, it looks like the statement ascribed to Thoreau was written  by his sister in a letter to a good friend,  telling of Henry’s life, illness, and death.  Thoreau was apparently a very vivacious man, as alive in illness as he was in health.  As his sister writes, “he remarked to me that there was as much comfort in perfect disease as in perfect health, the mind always conforming to the condition of the body.”

Perfect disease…what a concept.

Later in the letter, Thoreau’s sister, in talking of her brother’s attitude about his illness, she says that in response to a friend who said as a way of consolation, “Well, Mr. Thoreau, we all must go!” Henry replied, “When I was a very little boy I learned that I must die, and I set that down, so of course, I am not disappointed now.  Death is as near to you as it is to me.”

Now you know how this made it into a talk on impermanence.

But still I come back to idea of there being comfort in perfect disease… the secret being in the mind conforming to the condition of the body.  I think that means acceptance of what is.  Pretty simple…if not necessarily easy.  So now I’m going to try to quit feeling so sorry for myself:-)

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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!

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Seriously, I have a question, and it seems that I have a few readers now.  So I’m going to ask for your opinions and hope that you will provide them to me by commenting on this blog.  That is the great thing about blogs, of course.  In distinction to a static website, where you just throw stuff up and hope people read it, a blog format allows for an actual discussion to occur.

What I would like to know is this:  what do you want to read about here?  Right now, I base what I write about on what I am thinking about.  But I would like to have it more focused on what you would like to talk about.  Then, we can get some real discussion going, through comments here, through Twitter, through Facebook, with YouTube, etc.  This social media world is really quite amazing, and I would like to take advantage of it as much as possible.

So, send me your thoughts, as well as your Twitter, FB, blog or whatever you have URL’s, and we can get connected and go from there.  Thanks.

julie

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Ok, so sometimes it’s hard to be both sick and happy.  I will admit this.  Today, I am going to allow myself exactly the time it takes  to write this post to be less than happy.  So pardon me while I rant.

Sometimes having CF sucks.  There is no better way to say it.  This is one of those times.  Two weeks after pulling my IV from a three week course of antibiotics, I found myself in the Emergency Department with a fever and chest pain.   Bad chest pain…the kind that, when you have CF, you know is not going to end well.

Sure enough, the chest film shows an infiltrate and I need another course of meds.  So yes, at some point, I will get to “it’s a good thing there are antibiotics,” but right now, not so much.

Ok, enough.  I’m done ranting.

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I proceeded to look at my right arm, where antibiotics were being pumped straight to my right atrium, and thought that no reasonable person would call me healthy right now!  Does that mean I can’t be happy?  Of course not.  I was immensely happy!  I knew that I was receiving what I needed to feel better.  I knew that I was lucky to be able to get needed meds this way, OUT of the hospital, so I could still live my life while I was getting better.  I knew that it was a gorgeous night, and that even with a catheter in my arm, I was walking briskly and breathing with no problem.  I knew that when the class was over, I was going to sleep on a fabulous new king matress  completely surrounded by dogs.  I wasn’t just happy, I was ecstatic!

Shame on you, Wally Koala!  What kind of message are you sending to the patients at your hospital?

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This current illness has prompted several ideas for blog posts, although up until now, I haven’t had the energy to act on the ideas.  One topic that comes up frequently when I deal with my cystic fibrosis and it’s ever-present ups and downs is what my mind does with the very simple information that my body is not perfect.

Do you have ANTs?  By ANTs, I mean automatic negative thoughts.  Do you remember the last time you watched a colony of ants, as the workers stream in perfect lines to and from the ant colony with the single goal of procuring food and whatever else an ant needs to live a good ant life.  Perfect, tiny little single file lines of ants, determined to stay in line and do what is expected for an ant to do.

This is the way unhelpful thoughts travel in your brain.  They are a series of repetitive synapses that have traveled the same neuronal pathways in your brain so many times that they have worn grooves in the sand of your brain.  Now, they are automatic, as are their emotional and behavioral consequences.  So it is very appropriate for the acronym for “automatic negative thoughts” to be A.N.T.  I’ve read that humans have about 50,000 to 70,000 thoughts per day, and that 90% of them are repeats.  We think the same things, over and over and over.  It reminds me of that ant in a single file line, doing exactly what the ant in front of him/her (probably him I guess) does, without question.

Here are some examples of my ANTs:  “This disease sucks.  You just got through two months of P90X, only to have to stop!  You’ll never get through this 3 month program.  IV”s again?  I  (sometimes I’m “you” and sometimes I’m “I”  If you lived in my brain, you would have me committed.) already had 3 weeks of IV’s just a few months ago…My CF is progressing.  My lung function probably stinks right now…God, what if it doesn’t come back.  What if I am now on that downhill slope?  Oh man, I am coughing so hard…what if I start to bleed and never stop?  No one is here to help if I have massive hemoptysis…what would I do?  WHAT?  103 pounds…oh no… You’re disappearing.  How can you be losing so much weight?  What does THAT mean?  Do you now have to deal with CFRD and insulin, too?  That would really suck.  You know Julie, that CFRD usually means worsening of CF.  The good days are over.  Your luck has run out….” and on and on and on

They are automatic.  I don’t try to think them.  They just happen.  And they’ve happened before.  It doesn’t seem to matter to my brain that it is thinking useless, negative thoughts that it has already informed me of a million times, thank you.  They keep on coming.  I’ve tried to stop them..but that definitely does NOT work!  You can’t successfully tell yourself not to think something.  Just try…right now, try to NOT think of a pink elephant lying belly up in your living room.  See?  You can’t do it.  Just by imagining what you don’t want to think, you think it.

But I’ve learned a trick in dealing with these thoughts.  It’s come with practicing mindfulness, which simply means being aware of what is happening while it is happening.  In other words, I’m watching my thoughts.  And at the same time, I am watching what my body feels in response to these thoughts.  It’s not pretty.  What I see is a direct connection between negative thoughts and bad feelings.  “Duh,” you say.  “That’s a no-brainer!”  Exactly.  These processes occur below the level of your “brain,” or consciousness.  But when you become conscious of them, something pretty cool happens.  It turns out that you can’t be fully conscious of something you are doing that is harming you, and continue doing it.  When you directly experience the fact that negative thoughts lead to bad feelings, you will appreciate that you have direct control of how you feel.  All you need to do is decide to think alternative, more positive thoughts.

So instead of, “Your lung function probably sucks right now!” I can gently decide (consciously) to change the thought to, “Yes, my lungs are a bit under the weather now…..and that is why I am taking care of them by resting and infusing wonder drugs.  Thank God I have health insurance and access to  great health care!”  The ANT will try to take over, and I will have to be very alert for this, as the grooves run deep.  But as long as I catch them, I can always substitute a life and health affirming thought for the negative one.  Over time, the affirming thought grooves will deepen and the negative grooves will smooth over from disuse.

Try to catch your ANTs.  Remember, don’t try to force them away (remember the elephant).  When you catch and ANT, replace him with an affirming thought that carries with it positive feelings.  Is this Pollyanna, New Age garble thinking?  I don’t know.  But would you rather feel bad, anxious, worried and depressed, or hopeful and grateful for what is good in your life?  Which feelings do you think are healthier overall and better for you?  Does being depressed and worried help you in any way at all?  Will it change the outcome?  I would argue that being optimistic and grateful can change the outcome…for the better.  So why not give it a try?

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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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Today, I am taking a crash course in internet marketing.  Why?  This is what I keep asking myself.

The reason is that I really want to figure out how to get my upcoming e-book, “The CF Wellness Boot Camp” out to as many people as possible.

To do that, I am learning, I need a “LIST.”   So I am madly learning  about how to create “opt in” boxes everywhere, and how to create  an e-newsletter (to entice ya’ll to sign up to my “LIST),” to use FTP to do weird things to my blog, to tweak HTML to make things look better, and generally, to do all kinds of things that ARE NOT IN MY JOB DESCRIPTION!

But, alas, one  of my strengths is “love of learning,” so I should be very happy for a  very long time.  Please be patient with me.  I have great ideas for the newsletter, including exercise instruction and demonstration, interviews with nutrition and stress management gurus, and so much more.  Please sign up.  I promise you won’t be sorry!

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