Almost Six Months Later….

Well, it has been a very long time, hasn’t it?  You may wonder where I’ve been…why no words of wisdom from the now 50-YEAR-OLD Julie?

The reason is that it has been a winter from Hell, and I will just leave it at that because my mother (RIP) always told me that if I didn’t have anything nice to say, I should just say nothing.

But, here I am, ready to begin this strange past-time of blogging again, wondering if anything will fall out of my brain.  I decided while on my walk today that I will begin by doing what is easy: posting what I have already written.  Lame, I know, but let me explain.

Two years ago, I decided I knew exactly what would be helpful to other adults with CF, and I set out to write it up.  I fondly titled this project my “CF Wellness Boot Camp.”  The idea stemmed from the fact that most people with CF, and certainly all adults with CF, are increasingly thrust into what I like to term “exacerbation exasperation.”  Say that five times as fast as you can.  You know the game:  you go about, living your life, doing what you do, feeling as good as you feel, and then WHAM, you are sick, need IV antibiotics, and essentially life must go on hold.  Your body-your master- revolts, and you are its slave.

Three weeks later (and can I just get a hand here for Western medicine?) you are better.  Your lungs are clear-or as clear as they get.  You now have enough energy to shower.  You look at your desk, your kids, your spouse/parter, your dog(s), your list of everything you were supposed to do back on the day before the aforementioned body revolt, the scale now reports that you are five lbs lighter…  You take this all in, and the only thing you want to do is crawl back under the covers.  Does this happen to you?  It’s all so overwhelming, this re-immersion into your life.  Whatever fitness progress you made before your illness is gone.  The stress of being completely knocked down is replaced with the stress of getting up.  At least, this has been my experience.

So, the plan for the Boot Camp was to outline a three-week plan (everything seems to come in blocks of three weeks) to begin anew and re-enter the world with some new, healthy habits to accompany those pristine (?) lungs.  So I put on my wellness coach hat and began to write.

This was quite a project for me.  I wrote for a couple of months until I was happy with the content.  I then began to research how to make it into an e-book, put it on the website, and, generally, do all of the technical stuff that one must do in such a project.  Roadblock.  Big time.  Julie is not “tech-y.”

Thank God for David Mahoney, though, because he really tried to help me.  I was just not able to keep the ball rolling, and the project sat for two years, lost but not forgotten, on my hard drive.

So that brings me to my walk this morning.  I want to blog again, so why not start by posting my 21-day plan?  Maybe when it’s all up, I’ll figure out how to bundle it into a pdf and send it out instead of the fizzled out newsletter promise in the opt in box?  Who knows?

So, as my favorite email come-on’s say, watch your inbox (for those who have opted in)!  Tomorrow we begin the CF WELLNESS BOOT CAMP!

To your health….

 

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:-)

“Port”al

Eckhart Tolle likes to talk about “portals” to the Now.  My favorite of his suggested portals is focusing on the body sense.  It is a very simple exercise:  you simply ask yourself, “Without moving or looking at my left big toe  (or whatever body part you choose), how do I know that it is there?”  Immediately, you are connected to the feeling present in the body, and when this remains in your focus, you are in the present moment.  Try it.  Pick some part of your body, close your eyes and ask yourself, “How do I know that ______ is there?”  Then, let your attention move to feeling the entire body this way, as a whole.  This is using the body as a portal into the Now.  And of course, the beauty of being in the Now is that you can’t be uselessly rehashing the past, or pointlessly rehearsing the future.  Life is always Now anyway, and this exercise places you right smack in the middle of it.

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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Thoreau on Illness

So I’m walking my dogs tonight, as I often do, while listening to a podcast.

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:-)

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!

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