Operation Exacerbation

Welcome back!

Rule Number One that I hear myself telling people who are bummed out about their illness, whatever it is, is to remember, “there is more right with you than wrong with you.“

And that’s true, right?  Think about it, by some miracle you are here on this earth, breathing, most likely able to walk around, enjoy food, listen to good music, pet your dog, watch Survivor…

Why is that?  Because most of the 100 trillion cells in the body, each of which are probably performing thousands of events per second, are actually doing their jobs perfectly well right now.  If not; well, you would not likely be reading this.

Now I’m not preaching here.  I am mostly writing this for my own edification, because I just learned that I am now infected with MRSA in my lungs.  I really can’t convey in words what happened in my consciousness when I learned of this last week.  Maybe you know the feeling that really bad news carries with it.  The sinking feeling in the pit of the stomach, the tight chest and throat, the heart racing and the blood draining from seemingly everywhere…  Sh_t!

Then the anger, and the self-pity arrive.  Sh_t (again)!  Why me, why now?  This is a REALLY bad time for this.  I’ve got plans, Universe!

And then, the tears.

So, now I’m officially a CF Pariah.  Gown, glove and mask everyone…here comes Julie.  Man, I’m pissed.  And of course, really what I am is scared.  What does this mean?  Is my CF going to get worse?  Will the freakin IV’s even work this time?

So, I allowed this to go on for a couple of hours.  Then, I was better.  Then, it came back with a full and serious vengeance over several days.  And now, finally, I’ve decided to respond instead of reacting.  Or at least…to try.

The first thing that came to my mind was to write the post I was going to write before the fateful telephone call.  It seemed to me that writing about having a “positive exacerbation” could only be credible if it were to be created during an exacerbation.

So, even though this is a slightly unusual (for me) situation, it is most certainly a “CF adverse event” and just as certainly would be best handled with a positive attitude.

Here are a few things I do to make my three weeks of IV’s…my “home vacation:”

1) First, since I can’t exercise strenuously, I don’t.  I legitimately and compassionately stop pushing myself.  A gentle walk every day that I feel like it is about as hard as I’ll push these days.  After the port goes in and the PICC comes out today, my arms will be free at last, free at last.  So as I feel stronger…I’m back to those kettlebells!  Have I told you about my favorite new exercise?  Something else to post about.

2) I have incredible friends who have been incredibly kind.  I will appreciate them every day, in some way.  By telling them what they mean to me, I will add positive energy to their world and mine.

3) Sometimes it takes a real blow to the illusion of stability to wake me up.  This has been a great one.  I will resolve to appreciate what is good in my life.  The best way I’ve done that in the past is to keep a gratitude journal, and vow to write in it every night three good things that happened that day.

4) I have a post that I have been writing in my head for weeks now about the growing importance of meditation in my life.  I have been trying to figure out how to stress this without sounding like a preacher…hence the silence about meditation.  But it has been SO key for me this last week, that I will write this post.  It will be the next one.  I will pour my soul into it, for both myself and for those two or three readers I have:-).

So if you like this plan, or if you have some suggestions, or if you’d like to share how you deal with your own “operation exacerbation,” please leave a comment!

Rant

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.

“D” is for: Decide what you will think and how you will act

One of the most influential books I ever read was Victor Frankl’s “Man’s Search for Meaning.” So much can be gleaned from this masterpiece, but one of my favorite lines has to do with the “choice” of what and how to think.  As Frankl writes from the concentration camp in which he was a prisoner, “Everything can be taken from a man but …the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”  Indeed, everything was taken from him and his fellow prisoners as they lived through unthinkable suffering at the hands of the Nazis.  And yet, his choice was to not only live through the experience with grace and dignity, but to describe an entirely unique therapeutic method of finding meaning and a reason to live.

It’s a bit of a stretch, but perhaps it can be useful to compare living with a severe chronic disease with living in a concentration camp…at least this might work with the chronic diseases that are not self imposed, that cause pain and suffering, and that end in death.  Extrapolating Frankl’s quote to chronic diseases such as these would be something like, “Every part of health can be taken from a person except the choice of how he/she will respond to the situation.”

Yesterday, I had an “opportunity” to try out this tip.  As many of you probably know, the experience of going in for “routine” pulmonary function testing can be quite anxiety provoking for someone with CF.   It’s just a number…a measly “percentage of predicted”…. but that FEV1 result (the volume of air you can blow out in one second) carries with it amazing psychological power.  It’s no wonder, really.  Doctors use it to gauge how much of your lung tissue is still useful.  A sudden drop will land you in the hospital faster than you can say “pseudomonas.”  Transplantation becomes a dinner table topic when it drops to around 30%.  The progressive nature of CF dictates that it doesn’t improve much really (unless it drops acutely due to an infection that is then  treated successfully).  Over the long haul…it only drops.  We all just pray that it drops VERY slowly.  We worry about it.  Some lose sleep over it.  The kicker is that we have virtually no control over how well we do.

So yesterday, as part of a clinical trial I am volunteering for, I went in to Stanford for my baseline exam, and of course, spirometry was done.  I was a bit nervous about it, because the previous time I had been tested, I did so well that I didn’t believe it (see previous post).  My hope was that I would do as well this time, but deep down, I didn’t believe I would.  I would then have to accept that the previous measurement was a fluke (and I really didn’t grow a new lung in 90 days).

My nervousness turned out to be justified.  In fact, I was a good 25% below that previous unbelievable number.  Worse, I was 10% below the baseline I had been at for years.  The maddening part is that I had no idea why my numbers were down.  Not being artificially high, I could handle.  10% down made no sense.  I didn’t feel sick.  I had been coughing a bit more…but not that much.  I was bummed, and my research nurse friends knew it.  It was all I could do not to cry right then and there.

Driving home, I had a tiny epiphany.   I had already started this post.  In fact, I was stuck at comparing disease to concentration camps.  Suddenly, I knew that the “universe” had just presented me with a way to finish my article.  I realized I needed to “decide” how to think about this new development, and what to do about it.

Guess what I decided to do?  That’s right.  I went directly to the gym.  I did not pass GO.   I did not collect $200.  I hopped on a treadmill and ran intervals.  I proved to myself that a number was a number, and what mattered was how I felt.  And I felt great on that treadmill!  Then I lifted weights.  Then I decided that for the rest of the day, I wasn’t going to think about it…period.  And I didn’t.  I got busy working on a project and busied myself doing what I love to do.

The next day, when I was calm enough to be rational, I came up with a plan.  I will have to repeat my PFT’s next week when I go in for my quarterly appointment, so I’m not going to overreact.  If my numbers are truly down as much as it appears, I will talk to my doctor and get his input.  Maybe I will need some sort of intervention, maybe not.  What I do know is that I need to go back to the P90X program (or something equally intense).  It seemed to work before, so this would be a good chance to recreate my previous success.

What I will not do is panic and let fear cloud my decision making.  The worse case scenario is that I have a new baseline. If this is the case, I will choose to respond rationally.