Tonic and Me: Traversing the Winter From Hell

There is good news and bad news about getting old with cystic fibrosis.  The good news is that I am getting old with CF!  How great is that?  Although it is happening to more and more people as medical care gets better and the median age of survival creeps upward, it still surprises me every time I have a birthday.  I laugh at my wrinkles, chuckle at hot flashes, and marvel at the fact that I look, well, middle aged.

Living with an unpredictable illness is not all mirth and laughter, though.  Some aspects of getting older are a bit more frustrating, at least for me.  This is where Tonic, a new iPhone/iPad app, enters my story.  As you probably know, staying healthy with CF requires more and more effort with age.  There are more medications to take, more treatments to do, more effort is required to stay fit, to eat well, to manage CFRD, to get enough sleep, enough water, to do whatever it takes to make the plumbing system work well, remember appointments for the doctors and port flushes, to do…pretty much everything.  Yet, just as the “CF care complication” factor increases, the ability of the mind (mine, at least) to keep track of it all begins its downward descent.  This is poor design, but it is what it is.

I noticed it first with Advair.  I can never remember if I have taken it.  I don’t know… I seem to have a mental block.  The block then spread to enzymes, vitamins, children’s names, books I’ve read, etc.  While it’s much cheaper to be able to read the same book (and be entertained) multiple times, too many shots of ProAir or too many Pancrelipase capsules can be problematic.

I have officially dubbed this past winter, “the winter from hell.”  For some reason, I had three episodes of pneumonia with resulting rounds of home IV antibiotics over the span of eight months.  If this wasn’t enough, I cultured MRSA recently, so each round of IV’s included three different medications, all through IV access.  IV meds must be refrigerated of course, and when they come in Entermates (as two of mine did), they need to be removed from the refrigerator a few hours before being used.  When you forget to do this, 1) brrrr, and, 2) the infusion takes forever.  Not to mention that during exacerbations, I do three treatments per day, try to sleep, try to remember to eat (when I have no appetite), and take the usual oral meds, supplements, and vitamins.  I also have follow up appointments with doctors and need to get to the lab for blood draws three times each week.  Did I mention the port dressing changes? I literally needed a flow chart to traverse through my day, or I would forget an essential item.  Of course, most people get admitted to the hospital for this rather intensive treatment time, where, at least in theory, they keep track of these things.  Wink.  But I hate hospitals, and only go in if it is absolutely mandatory.

Enter Tonic.  As luck would have it, I was able to beta test Tonic this “winter from hell.” Tonic is an app that helps you to remember and track whatever you need to track.  Setting up Tonic is a simple task.  You simply make a list of all that you want to remember and track.  It took me about 30 minutes because my list of “tonics” was enormous.  When it was done, though, my trusty little iPad would bleep whenever I had to do something.  Take out med (bleep).  Infuse this (bleep).  Take this (bleep).  Eat (bleep).  Weigh yourself (bleep).  Eat more (bleep).  Trust me, the thing was bleeping all day, every day of each exacerbation.  But I was so completely on track!  I missed nothing.  Nor did I do or take anything more than I was supposed to, because you check off each “tonic” as you do or take it.  This is a very satisfying property of Tonic for anal compulsive people who like checking things off lists (like me).

Second, remember that the idea is to make your life easier, not to add another chore to your day.  When my life is so complicated that I really need help, I use Tonic.  But other times (like now) when things are pretty good, I let Tonic fade somewhat into the background.  It still reminds me, but I turn off the “bleep” alarm and don’t always check off all the activities or enter a lot of data.  You will find your own balance.

In summary, Tonic is just what I needed at just the right time.  I would recommend it to anyone, whether you have a complicated regimen like mine, or just want to track a few things.  If you decide to give Tonic a try, let me give you two hints.  First, use it for all of the things you do for your health.  Everything. Really.  Meds, sleep, exercise, nutrition, water intake, everything you can think of that you know you want to do to be at the top of your game.  For instance, Tonic even reminds me to journal, to stretch my hamstring muscles, and to meditate.

You can find Tonic on the web at http://www.tonicselfcare.com.

 

 

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….

 

Stability Ball vs Lower Body

Try out these exercises with your ball.  They are great for your legs and abs! And don’t worry, you can do them with a PICC in your arm!

Lower Body Time!!!

When you are addicted to weights as I am, those weeks with a PICC line can be a pain the the butt, and psyche.  In order to not get completely depressed (i.e. to stay sick-but-getting-less-sick and happy), I always at least walk every day, and then as the magic juice starts working and I feel better, I’ll add in resistance work for my lower body. So I’m starting to add in some video blogs because a) they are easy to do, and b) it is much easier to demonstrate exercises than to describe them in words.

Here is the first of this weeks focus videos–LOWER BODY TIME.  Today is the squat, a very basic exercise that targets multiple muscle groups.  Go for it.  Add weight if you can (hold dumbbells at your sides).

Operation Exacerbation

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!

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