“Port”al

Welcome back!

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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Can I Exercise When I’m Sick?

Not that I’m an expert on this… The last time I had a PICC line I ended up with a DVT (blood clot) in my arm and had to be on blood thinners for 3 months.   Why?  Well, I’m not exactly sure, but it could be because I didn’t want to atrophy away, so I was doing push ups as well as my daily walk.  Dumb.

So maybe this does make me an expert because I definitely know what NOT to do.

Here’s my take:

If you have a PICC, NO UPPER BODY RESISTANCE TRAINING NOT EVEN PUSH UPS WHAT ARE YOU THINKING?!  But when you start feeling better after the first few days of “happy juice,” as I now call it, you can definitely go out for a nice walk every day.  Or get on an stationary exercise bicycle.  Basically, the bottom line is don’t push it too hard, but it is good to move! If you don’t move for three weeks, it will be very difficult to get motivated again, and you will lose muscle mass, a very bad thing indeed.  Be gentle.  Be mindful.  But, move.

If you have a fever, no exercise.  Rest.

If you are just coughing more than usual, but don’t feel too bad…well, this is a tricky one.  Are you losing weight?  Are you eating well?  Do you have energy?  This is probably a good time to call the clinic, let them know what’s going on, and ask for your doctor’s opinion on the exercise question.  Do I do that?  No (well, I ask myself and I usually tell myself to quit being a wimp and do some push ups). But I’m learning to not listen to that inner little sergeant.

Last week (Week One), was the “walk every day” week.  My dogs loved it.  I also did daily Qigong (gentle stretching).

This week, I’m adding some lower body exercises (squats) and curl ups to the above.  Feeling good!  Zero cough.  I love this happy juice.

Next week, who knows…but it won’t include push ups.

ANTS AND ELEPHANTS

Well, it’s been awhile.  I’ve been a bit under the weather lately and haven’t posted anything as I’ve dealt with illness.  Now, I have a PICC line, through which I am receiving antibiotics, and the magic medicine is starting to work, so…I’m back..

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?

Discover Your Strengths and USE Them Every Day

I am a personal fan of the field of positive psychology.  I love to read about what it is and what it is teaching us about the science of happiness.  I like to take courses and attend conferences about the subject.  In fact, the whole purpose of this blog (and hopefully of a future book) is what the scientific study of positive emotion can teach people with serious health concerns about optimizing their happiness and wellness within the context of illness (hence the title of the blog).

The “D” in my acronym stands for “Discover Your Strengths and Use Them Every Day.”  First, I want to describe why this is important when it comes to happiness.  Then I will show you how to discover your strengths the high tech way (an online resource).  Of course, you could just ask you mother.  Then I’m going to describe a project I am designing for this blog that allows me to use my strengths as an example of putting this “rule” into action.

It used to be that to “improve ourselves,” we were to work on our weaknesses. However, new research shows that living and working from our unique strengths rather than paying attention to deficits creates lasting personal happiness and allows for peak performance. When we identify and further develop our unique talents and character strengths, we contribute more effectively and enjoy the process more.

It makes sense, really.  Imagine that you are doing something that you are really good at, working towards a goal that you strongly believe is important.  In fact, go ahead and close your eyes and remember such a time.  Remember the feeling of mastery and  flow you might have felt during the activity, and the sense of accomplishment when you were finished.

Now remember the last time you struggled to do something that was beyond your skill level.  It was likely something that you were not innately good at, and likely caused great frustration and a feeling of inadequacy.

Clearly, the first situation leads to positive emotion; the latter, not so much.

What are your strengths?  You probably have a good idea without a scientifically designed questionnaire.  But, if you take it, you might be surprised.  I know I was.

In his book, Authentic Happiness, Martin Seligman describes how he and his colleagues came up with the Values In Action (VIA) classification of character strengths. There are 24 character strengths each describing a specific aspect of positive human character. The strengths are grouped into six categories termed virtues. These virtues have been determined cherished among most religious and philosophical traditions.  Collectively, they are said to capture the notion of good character.  The characteristics of character strengths are:

•    They are moral traits and can be developed and strengthened by choice.
•    They are valued for themselves rather than as a means to an end.
•    Using them elevates rather than diminishes others.
•    They are ubiquitous.

We all have the ability to exhibit any of the 24 character strengths but tend to rely on some more than others. The website www.authentichappiness.com offers a free, online survey called the VIA (Values in Action) Signature Strengths Questionnaire, which ranks your strengths in order of importance to you. Your top five strengths are your Signature Strengths.

When I took this questionnaire, I was intrigued by what turned out to be my top five strengths.  I won’t go into them all now, but one that struck me as quite useful for me to have was number two:

Hope, optimism, and future-mindedness
You expect the best in the future, and you work to achieve it. You believe that the future is something that you can control.

Maybe that has something to do with why I have done so well (so far) even though I have cystic fibrosis.

I love to do projects…especially projects related to either learning something, or achieving an athletic goal.  I love to set a goal, and then plan my strategy to achieve it.  I am now, and always have been, very goal oriented.  Goals excite me…they challenge me, and bring out the same self-discipline that carried me through medical school.

Not surprisingly, I was a sucker for the P90X home exercise program this spring, and have written about that experience and the unexpected results in a previous post, “How I Grew a New Lung in 90 Days.”  Now that I have a PICC in for IV antibiotics again, I am already starting to plan for the next round of “get Julie back in shape”.  And, now that I have this blog, I am going to post what I do and how it felt each day.  Why?  So that if any of you are interested in joining me, you can do so, and we can motivate each other!  The best thing about a blog is that it allows comments…both to and from the blogger.

So, if you want to join me, the start date is Monday, September 29.  This will be a three-month program (unless my lungs say differently).  I am creating a program that merges the P90X program with a weight-training regimen I have done in the past to successfully gain muscle mass.  There will be six exercise sessions per week with one rest day.  Each session will take about an hour…except on ab days (ouch).  You will go at your own pace, but I will recommend a given “perceived exertion level.”

The equipment needed is: you, water, supportive athletic shoes, some light free weights, and a chin up bar.  If you can, buy the P90X program.  I will use their aerobic and ab routines because they are great!  Also, if you don’t want to go to a gym, you can do the weight training sessions with just the above equipment.  The program I am doing is a modified P90X because I love going to the gym and lifting heavier weights.  The P90X weight workouts are good, and if you do them, you will definitely get stronger.  I just need to atmosphere of my gym, and want to use heavier weights because I have some significant strength to regain.

Are you game?

Time out for a PICC

A post from the hospital:

Last week, I was admitted to the hospital to get a central line placed for a course of home IV antibiotics. I was in for two days…not bad, really. The only reason I had to be admitted was because in order to get it put in as an outpatient, I would have had to wait two weeks. Not good when you need antibiotics. The experience was SO different from the one I had last winter because I actually didn’t feel sick this time My PFT’s were significantly down though, and it seemed like a good thing to do. In fact, it was kind of comical. Below are some of my observations, which I had been diligently jotting down:

First, if you really want to confuse nurses, go into the hospital relatively healthy. Bless their hearts, the poor things don’t know what to do with you! I was bopping around the nurses station, asking if I could go find a coke machine my first afternoon, and the look of pure incredulity I received was priceless. I couldn’t help it…I had asked for a coke at 2:00, and by 4:30, I was getting really thirsty! They told me that “my doctor didn’t write an order that would allow me to ambulate” (I so love that word). I told them, “Well, I’m a doctor. Can I write the order? Clearly, I am capable of walking…even without an order.” They weren’t amused, but they did go raid the staff refrigerator and get a coke for me.

When the fifth year medical student from Stanford came in, I was in a feisty mood, so I didn’t tell him that I was a doctor at first. He was taking the usual exhaustive history that you take when you are on the wards for the first couple of years. A typical dialogue is below. I have changed the name of the med student because he was very nice and I liked him…green as he was…to “Doogy Howser” because I swear he was the spitting image. It goes like this:

Doogy, ascertaining the chief complain (cc): “So, tell me why you’re here?”
Me: “I have CF.”
Doogy, digging deeper: “Well, tell me how your last couple of days have gone?”
Me: “Pretty well. I went running this morning.”
Doogy, confused: So…why do you need antibiotics?”
Me: “My doctor said so.” And on it went for awhile. Then I felt bad, and started to be nicer, answering all of his questions with a smile. He got back at me though, I found out the next morning when the nurse came in with my meds.
First, she tried to give me a shot of sub-cutaneous heparin. I said, a bit bewildered, “I don’t need that.” I’m not sure anyone has turned her down before. She looked sad.
It turns out that if you are in the hospital, they assume you are bed-ridden (imagine that) and need to be guarded against blood clots. She apparently hadn’t seen me do my yoga routine earlier.
Then came the stool softener and the Prilosec. If you even get close to a hospital, you get a stool softener and a Prilosec. Try it. Drive by, and see what happens.

When the PICC nurse couldn’t get the line in the next morning, I had to go to interventional radiology. This was quite a treat, because they have very cool imaging in radiology that you get to watch…in real time. So, after I got over the humiliation of riding in a wheelchair (the RULE…there are a lot of RULES), when I could have taken the stairs at a run, and beat the transport person taking the elevator, I hopped up on the table and asked if I could watch the line snake its way from my elbow to my heart. That was definitely the highlight of the visit for me.

The weird thing was, after the line was placed successfully, I had to wait to show them that I knew how to give myself the antibiotic. Now this RULE was really annoying, but humorous nonetheless. I’ve probably given myself IV infusions 600-700 times (rough estimate) but I had to prove my prowess.

Finally, at about 5:30, I was informed that my meds had been delivered from the central pharmacy, but I had to wait while they changed the labels…don’t even ask…another RULE. Then the call came, the drugs were ready. Do you think I got to go get them and leave? Nope…had to wait for transport again. This time, I drew the line. I walked to the pharmacy, next to transport. We had a nice chat.