Here is why (David Letterman style) I think strength training needs to be a key component in your workout–especially if you have CF:

10) You can seriously increase your appetite, especially if you are doing a heavy lifting program.  Lifting heavy and the consequent eating like a horse is how I gained six pounds in six weeks.  Doesn’t sound like much, I know, but it’s about 6% of my body-weight (you do the math).  The only time I’ve ever been able to gain that much weight was the first year of college.  Man did I love that all-you-can-eat cafeteria.

9) It’s great to beat your son at arm-wrestling.  OK, so he’s only 12.

Maintaining bone density is pretty important, unless you want to crumble into a heap of skin and bones in your old age.  Yes, I did say ‘old age.’  It will happen.

7) In CFTR-able people (code name for those without CF), lifting weights increases insulin sensitivity.  There is no reason to think this won’t be true in CF as well.  If you CFRD or are on the verge, or, if you don’t want to develop CFRD, a little weight training can absolutely not hurt!

6) You get to buy new clothes when you ‘outgrow’ your old shirts, pants, etc.  Ladies, don’t worry–I’m kidding.

5) Who wants to be soft?  Weight training will firm up those abs and legs and arms in very little time.  Try it.  You will be amazed.  In addition, who wants to be skinny and wimpy?  This will not be the case if you adhere to a regular lifting schedule.

4) Being stronger will make the regular chores of life easier.  Easier means requiring less energy.  Requiring less energy means requiring less oxygen.  Less oxygen required means even if you have sucky lungs–that’s a technical term–you will still be able to carry on, soldier.

3) Coughing is easier and more effective if you have strong abdominal muscles.  This is just true.  Given that we cough, and the effectiveness of our coughs is directly proportional to our health…strong abs are very important.

2) Let’s face it, body image can be impaired in CF.  It’s not hard to imagine why this is true, but this is a very important issue, especially in kids. One very good way to improve body image is to develop muscle.  Development of muscle is not impaired in CF (as long as you eat and digest food).  We can ALL do it.  And when you do develop muscle that is visible to the naked eye…you feel better about the way you look.  Even if you cough.  Even if your fingernails look funny.

1)  I left this for last because it is my favorite reason to lift.  You are in control when you lift.  Not CF.  CF doesn’t affect your strength.  CF doesn’t stop you from developing strong muscles.  There is absolutely no difference between you and normal Joe GymRat, when it comes to getting strong.  Booyah.

These are good reasons to add resistance training to your workout.  The next post will discuss how to design your program.

Related Posts:

• Step One of Perfect Workout: Rolling
• How to Structure Your Weight Lifting Routine
• Step Four of Perfect Workout: Movement Preparation
• Step Three of Perfect Workout: Corrective Exercises
• The Perfect Workout

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.

Related Posts:

• Step Four of Perfect Workout: Movement Preparation
• Step Three of Perfect Workout: Corrective Exercises
• Step Two of The Perfect Workout: Just Move It
• Step One of Perfect Workout: Rolling
• Why I Hate CF

After living 50 years as a fitness nerd, I have a few ideas about what constitutes a perfect workout for me.  Of course, this all depends on which “me” shows up to exercise that day.  Is it the “feeling great” me, the “getting back up on my horse after a round of IV’s” me, or the “not exactly sick, but not feeling at my peak” me?  The right workout for each situation will be vastly different, but the basic constituents of the hour or so at the gym are the same.

Is there a “perfect workout” for you?  Yes, but I guarantee it is unique to you, and unique to you on this particular day.  From the 10,000 ft point of view, the “perfect workout” is the one that you will do, consistently, and if not enjoy, at least not abhor. It should leave you feeling tired in a good way, so that you know you did some work, but not so exhausted that you dread the next encounter with your inner athlete.  And if you live with CF or some other chronic illness that waxes and wanes, the perfect workout is a moving target. Some days, 20 minutes on the elliptical is the right amount, while other days, 5 minutes on the stationary bike is what your body needs.  On really awesome days, a 5-mile hike in the woods fits the bill perfectly.

But whatever state your body is in, the components of each workout should be the same, modified to suit your body, with its particular issues.  Each component is important, and the order that you complete each component matters.  I’m going to run briefly through each, and offer some suggestions for specific exercises that work for me and might also benefit you.

The order is as follows:

soft tissue work

mobility exercises

corrective exercises or “pre-hab”

movement preparation or active stretching

strength training

cardio or “metabolic conditioning”

stretching (passive)

nutrition

Yes, I put nutrition in there at the end, because at least for me, it is vitally important to feed my muscles nutritious food including both carbs and protein very soon after exercise.  Experts say a ratio of 4:1 carbohydrate to protein is what you should shoot for.  You can do this very easily by drinking some chocolate milk, or eating a peanut butter sandwich.  It doesn’t have to be complicated, but it does have to happen.

So, let’s go through the actual workout.

Soft Tissue:

This consists of a:bout 10 minutes of foam rolling or using a tennis or lacrosse ball in areas of muscle and connective tissue that is excessively tight.  You know an area needs to be rolled when it is uncomfortable to do so.  If you don’t feel discomfort, you are good to go on to the next spot.  I generally start with a ball to my feet (ouch), and then go to the foam roller for calves, hamstrings and glutes.   I then flip over and do my quadriceps.  Then I take out the magic “peanut,” my extremely complicated and expensive device that I now absolutely cannot live without.  With this, all my tension dissipates from my back, as it remembers how to extend after my day of sitting, coughing, and typing. That’s it!

As I said, I’m fifty.  I have accumulated a lot of tight areas.  You may not need this much, or you may need more.  Only you will know, by trial and error.

Mobility Exercises:

This is also not complicated and we are talking about joints here. Having good mobility simply means that you are able to take each joint through its natural range of motion.  Each joint is different, of course.  The knee joint shouldn’t be able to traverse a circle, while the ankle joint should (ha…tell that to my ankles!).  Take a survey of your body.  You will be able to tell which joints are tight.  Work on those.  Also, do some range of motion in the joints that you intend to use in your workout.

Corrective Exercises:

These are also referred to as “pre-hab” exercises, presumably because if you do them, you won’t ultimately require “rehab” exercises.  Simply put, the idea is to strengthen weak areas that contribute to unhealthy movement patterns or poor posture.  In my case, and likely in the case of anyone with CF, this is primarily my thoracic spine.  Lung disease and chronic coughing cause the biomechanics of the chest wall to get messed up (to use a technical term).  The result is the “hunched” back and rounded forward shoulders we commonly see in each other.  Corrective work for this focuses on opening the anterior chest and shoulders with active stretching, and strengthening the muscles of the back that pull the shoulder blades back and down.

Movement Preparation (AKA active stretching):

This is the “warm up” part of the workout.  The goal for this portion of time is to actively work the areas of your body that you are about to engage.  You slowly start asking more of the heart and lungs as you begin using large muscle groups in a similar way to what you are about to ask of them.  For example, if this is a leg workout day, you might begin with some lunges, or body squats and add in some walking hamstring stretches.  If you are going to focus on bench pressing, simply pressing a very light weight for a few sets of 5-8 would be a great warm up.  If you are going for a walk or jog, beginning to do that exercise at a slow rate for a few minutes is the way to go.  It all depends on what you plan to focus on that day.

Strength Training or Cardio (metabolic conditioning):

I put these in the same category because I would suggest focusing on one or the other during a workout.  You can do this by alternating lifting days with cardio days. Alternately, you can do both at the same time by doing weight training in a circuit fashion, with little rest between exercises.  My favorite way of doing this these days is with kettlebells, which I will discuss in another article.

The main thing to remember here is to start small and slowly progress as your body adapts to the challenge.  If you want to be able to run a 10K, that is awesome, and you can do it!  But start with walking/jogging intervals which feel like work, but also feel good!  There is no better way to sabotage yourself than to rush your body faster than it can go.  How will you know if you are?  You won’t want to keep doing it.  When you start dreading your daily jog, you know you are pushing too hard.  As you very slowly start adding time to your workout, or lesson the periods of rest (if you are doing intervals), you get stronger and stronger.

Stretching (Passive):

Ah…this is what you’ve been waiting for.  The end of the workout!  You’ve done your last set, or run your last interval.  You want to grab your stuff and go fall on your couch.  But wait!  There’s more…

This is the time to do just a little bit of flexibility training.  Your muscles are warm and pliable…a perfect set up for some passive stretching.  Passive stretching just means holding a muscle in the stretched state for about 20-30 seconds.  This is what we normally think of as stretching. Spend just 5 minutes stretching those areas on your body that tend to be tight.  You don’t need to go through a whole yoga series here.  You know what you need.  I almost always need low back and hamstring stretches at this point.  I also find that this is the perfect time to lay across the foam roller lengthwise (so it is under my spine from my head to my butt) and open my arms to the side and let gravity open my chest.  Some deep, meditative breathing in this position is the perfect way to conclude the workout.

And before you hit the couch, don’t forget to eat!

Related Posts:

• Control Trumps Fear When it Comes to Adherence to Exercise in Cystic Fibrosis
• Step Five of the Perfect Workout: Strength Training
• Step Four of Perfect Workout: Movement Preparation
• Step Three of Perfect Workout: Corrective Exercises
• Step Two of The Perfect Workout: Just Move It

weekend constant companions

Today is a new day, and instead of focusing on what isn’t working (most of me), I am going to write about my experience at the RKC in Minnesota just two weeks ago (it seems like two years ago at this point).

For those who don’t know, RKC stands for Russian Kettlebell Challenge, and the weekend certification is an intense three day immersion into technique and proving that one is “worthy” of the title “RKC Instructor.”  It is not for wimps.

Kettlebells have been around for hundreds of years in Russia, but are relatively new to the scene here in the US. They were brought here by the Evil Russian, Pavel Tsatsouline, a former Soviet Special Forces physical training instructor.  He is known now as the modern King of Kettlebells, and it is his methodology that is taught by “official RKC’s.”  Since bringing the kettlebell to this country, Pavel’s proteges are found on the Secret Service, Counter Assault Team, among US Navy SEALS and Force Recon Marines.  And then, there’s Julie.

Now you may wonder, why would a 50-year-old woman with cystic fibrosis want to be in the company of men and women who are either hard core trainers or athletes or counter-terrorism experts?  Kidding on that last one…

Yeah…I wondered that, too.  Especially at the meet and greet that happened the night before it all began.  I was there by myself, of course (who would accompany me to this?).  I stood in the room looking around at the healthy, muscular men, all many many years younger than I, and the equally healthy and fit, excited young women…I was looking for some older faces.  Please God, don’t let me be the only old person AND the only half-assed lung person.

Don’t get me wrong.  People were friendly.  Everyone was incredibly friendly to me.  Not just friendly, but reassuring me that I wasn’t crazy to be there (oh, what they didn’t know).  Many, many older people come to these certifications, they assured me, and some even came just to meet a personal goal, like me, rather than to be over-prepared for their upcoming SEAL training.

Needless to say, I went to bed with just a mild bit of trepidation.  Would I pass?  Pass…hell, would I live through this?

When I say, “pass,” what I mean is to meet all of the requirements of the weekend.  This is not just to pass the dreaded “snatch test,” (A snatch is a move where the bell is brought -with one hand-from between the legs to over the head with a strait arm in one fluid motion. My challenge was to snatch a 12 kg kettlebell 100 times in 5 minutes, switching arms as needed.  BTW–12 Kg = 26 lbs).  Just FYI, if I were to go to the garage right now and try to snatch my 12 kg bell for reps, I might get in 3 or 4 before I had to stop and gasp for air).  The snatch test is what everyone fears.  It sucks.  Seriously…even for healthy people.  It is a test of muscular endurance and aerobic capacity for which one must train for months in advance.  It’s also a test of sheer will, and the ability to endure pain.

But wait, that’s not all.  In addition to the snatch test, women must do the arm hang for 15 seconds (cake), and a woman of my size has to show perfect technique in the double kettlebell  (52 lbs) swing, double clean, double squat, double press, and the  single snatch…all for five consecutive reps. In addition, one must show perfect technique on an unusual exercise with an equally unusual name, the Turkish Get-Up.  None of these were cake.  Instructors were very picky about perfect form…for good reason–if they were to send people out to teach with sloppy form, the whole RKC brand would be harmed.  Form is everything…it prevents injury and promotes safety.  Nobody passes without perfect form.

But even that is not all that is necessary to pass.  The hardest thing required is that you actually have to get through each day of grueling practice, random “punishments” for the whole group if someone messes up by wearing the wrong shoes or sitting with a flexed spine.  I’m serious…they are very serious.  The first of such punishments come early on Day One, when we had to walk around the block carrying our snatch test bell.  This is way harder than it looks. Here we go, with yours truly leading the pack:

yep, that's me in front

And finally, there were “workouts” scattered throughout each day.  Each were short, only 10 to 20 minutes, but can you spell i-n-t-e-n-s-e?  I’m  blanking on most of them…I’m sure my brain is trying to spare me the memories.

Another requirement for passage was to demonstrate on the last day that we were capable of teaching what we had learned to bussed in “victims.”  These were volunteers from the community who “wanted” (read: they were bribed by great discount prices on Dragon Door products) to learn from newbie instructors about the latest greatest exercise craze.  We each got a victim to teach for 45 minutes, and then to workout for 10 minutes.  I had a great guy who already knew a fair amount.  I got lucky.

Finally…the last requirement…the “graduate workout.”  If you don’t complete it, you don’t pass.  It can take you all day if you need it, but you and your kettlebell (now your best friend) make your way up and back a huge field, stopping to swing and snatch away.  It took 40 minutes.  It was cold…I swear I saw snow (May 1, in St. Paul, MN).  I couldn’t feel my feet.  But when I completed that last swing, I was the happiest girl in Minnesota.  Heck, I wasn’t even the last one to finish!

Following the Grad Workout, we all waited with baited breath for our one-on-one meeting with our team instructors, for overall evaluation and the final decision…pass or “you’re fired!” (not really, if you don’t pass, you get a chance to work on your flaws and send in a video of you correctly performing the required exercise).  About 30% don’t pass.  These are athletes!  Seriously.

So, long story short:  Here is the evidence that I gave it my all:

This is after Day One.  I read somewhere that we did about a thousand swings on Friday.  I didn’t count, but I would believe it.  After I took this picture, I ordered room service because I literally could not move from the chair.  The bummer was that I could not sleep, 1) because I was on California time, and 2) I went into the weekend thinking the snatch test was on Day One.  Turns out they moved it to Day Three…so I was still nervous about whether I could do it…even more so actually, because I knew that by Sunday I might not be standing.

The morning of Day Two, I got out of bed with nary a single silent muscle fiber.  They were all screaming at me.  It reminded me of the day after the first day of basketball practice when I was in high school…only worse because I don’t believe I was fifty years old back then.  It didn’t help that I had to get up an hour early to do my treatment.  Yes…I did them all … except one.

Day Two went from 8 am to 7:30 pm.  Yes it did.  There was a 45 minute break for lunch and scattered water breaks through the day.  Also scattered through the day were more workouts, and more punishments.  Is this what military boot camp feels like? Learn and practice, all day, the clean, the press, the front squat, the snatch.  A favorite workout of mine this day (not) was called the “breathing ladder.”  Basically, it consisted of swinging the kettlebell for a given number of reps and then only resting for as long as it took to take a given number of breaths.  The reps increased, as did the number of breaths allowed, until we were all dying (not really). The purpose was to teach you how to slow down your breathing when stressed and breathe from the diaphragm.  A laudable goal, yet I don’t recommend this for anyone with a lung disease.  I did it, but the whole time I was wondering if I was about to desaturate right there on the floor.  I collapsed in the bathtub that night, wondering why the Holiday Inn bathrooms didn’t have those little strings you could pull for help, like they have in hospitals and assisted living centers.  I had only myself to blame.  No sleep again, but this time it was due to Prom night, and the collection of very drunk women who wanted to party in my hallway at 3am.  They were actually yelling.  I hope I never acted like that.

Day Three was there before I knew it.  I woke up determined to tape my hands in a way that would protect them from inevitable tearing during the snatch test.  I had read about this technique, and had brought with me all the requisite medical equipment.  I was a doctor, dammit.  I could help myself out a little.  Here is my beautiful tape job, done while inhaling salt (this is tricky, if you think about the number of hands required to 1) get taped, 2) do the taping, and 3) hold a nebulizer).

Do you realize how long this took?

So when the day starts, we all gather in our teams, and our Team Leader, Andrea Chang, says, “I need to see all hands.”  I hold mine up, proudly.  She looks at me and says, “Take it off, I have to see the skin.”  What?  I was chagrined. My masterpiece…in the garbage.  Apparently, they needed to see intact skin before the testing was to commence.  If anyone had an open wound, they had to be taped.  This is where you might say…but you were taped, Julie.  Yes…  It didn’t help that when she looked at my hands, she said, “You don’t need tape…you’re good.”  Ha!  Good… At this point of the weekend, I was not good.  My lungs were GREAT, but everything else hurt like hell.

Go lungs.  And they did.  The tests came, and went.  Technique tests were a bit nerve-wracking, because you know they are watching every single hair on your head, every angle, every point of contact with the ground, every joint position.  It was more of a mental test than physical.  But, then came the moment of truth.  I run outside to do the snatch test…remember, 100 in 5 minutes.  I had done this once before, so I had a modicum of confidence.  Yet, this had been before my most recent bout of pneumonia, so it was a very tiny modicum.  I really didn’t know if I could.  I remember thinking as I bent down to get set up to start, (and I know this sounds corny, but it’s true), Kathy…Tom…I’m doing this for you guys, too.  And I started.  I don’t remember it really.  What I remember is that with 10 seconds left, I had to go ALL OUT to get the 100th done.  But, I did…there was no way I was going to end up with 97, or 98, or,God forbid, 99. And then I seriously sucked air for many, many minutes.

When the Graduate Workout time came later that day, I knew I could do it.  If I could pass the snatch test, I could do anything.  I had a lot of folks cheering me on, by this point.  It felt unbelievable.  I was strong. I was woman.  Did you hear me roar?

The whole thing was surreal.  The feeling of pride that came over me after the last swing was more immense than when I graduated from medical school.  It was the hardest thing I have ever asked my body, and my will, to do.  And I did it as a 50-yr-birthday present to myself.  When times get tough, as they kind of are now, even reading what I have written cheers me up.  I am tough.  I am a fighter.  CF will never win.  I will decide when to go back to my corner.

R…K…C!!!!

Related Posts:

• Step Five of the Perfect Workout: Strength Training
• Step Three of Perfect Workout: Corrective Exercises
• Step One of Perfect Workout: Rolling
• The Perfect Workout
• Operation Exacerbation

I’m in a bad mood.  I hate this disease.  I hate the fact that this is my third bout of pneumonia in less than eight months.  I just had this “cute” blog post idea of listing my seventeen-part day (with each part being a picture of each CF medical regimen item in my current plan to stay alive).  But I don’t feel like being cute.  I’m mad.  I know this shouldn’t be a blog topic on a site called “Sick And Happy.”  It’s only 50% appropriate.  But let’s face it, happy is only one side of a coin.  There is no happy without sad…or mad…or afraid.

This is when I wish I could call up my sister, Kathy and see how she did it.  Or my brother, Tom, and ask what his secret was.  But I can’t.  I have to find my own course of action.  For now, it is to write until the tears stop flowing and the dog gives up on trying to console me to go back to the couch and sleep.

There is nothing fair about a disease that consumes your entire day…and night.  That, no matter what you do to keep it at bay, never leaves you alone. There is no one to do it for you.

If this were really a blog about how positive psychology techniques can help you cope with chronic illness, I would now do something like count my blessings…or appreciate the fact that at least four lobes of lung tissue are relatively clear…or that, somehow, I have not lost any weight this time around.  Perhaps I would write a letter of gratitude to someone.  Or maybe I would write about my “best possible life” to cultivate some optimism.  No, not this time. Instead, I am going to practice a mindfulness technique.  I am going to be aware of every f’ing thing I hate about this disease, in list form.  Maybe I’ll come up with seventeen.

1) I hate that I can’t call up Kathy or Tom.

2) I hate that it is 11:09 in the morning, and I have yet to have time to eat breakfast because my entire day has been treatment and IV infusion focused.

3) I hate that I have to set an alarm in the middle of the night to stop my IV and flush my port.

4) I hate that I have a port, a week before a trip to Hawaii, where I will try to cover it up so other people won’t wonder what is wrong with me.

5) I hate that I can’t seem to gain any weight no matter how many milkshakes, Jack in the Box Grilled Bourbon BBQ Steak Sandwiches, and Boost Plus that I consume.

6) I hate that when my sons come home from school with a friend, they are embarrassed to find their mother lying on the floor, doing the Vest Boogie while infusing antibiotics.  ”Oh that?  My mom’s sick, that’s all.”  Unspoken is the fact that “other mom” is the picture of health and has more friends than God, and probably cooks hot meals every night.  Unfair.

7) I hate that I feel guilty that I want company at the same time that I don’t want anyone to see me at my lowest of lows.

I hate my lungs…every last lobe…down to every single alveolus.  I don’t know why this came out as a smiley.  Maybe God is talking to me.

9) I hate spending enough time on the toilet to count the tiles on the floor, wondering how painful it is going to be to conclude this particular event.

10) I hate worrying about traveling now, wondering if something bad is going to happen far, far away from my CF clinic.

11) I hate not being able to hug my father, who once-upon-a-time had a MRSA skin infection.

12) I hate the fact that I am paranoid about even visiting him at his home in a retirement center, because such places are havens for resistant bacteria.

13) I hate that I have to get mad at my oldest son for not covering his mouth and nose at any slight eruption of air.  And he never remembers, so…I get mad a lot.

14) I hate wondering when the inevitable downslide is going to really get going, and how I am going to cope, and what my kids will think.

15) I hate that every time I get sick now, I need an entire team of specialists (or House) to figure out what to do with my lungs, my liver, my kidneys, my psyche.

16) I hate needing so many people so much of the time…doctors, partner, friends that I don’t want to ask for help, siblings.

17) I hate that today is a great day for Little League baseball, and it doesn’t even sound fun.

I’d better stop.  Seventeen hates…seventeen self-care items per day.  Sounds balanced.  Tomorrow will be a better day, and maybe I’ll feel like being cute.

Related Posts:

• Step Four of Perfect Workout: Movement Preparation
• Step Three of Perfect Workout: Corrective Exercises
• Step Two of The Perfect Workout: Just Move It
• Step One of Perfect Workout: Rolling
• Tonic and Me: Traversing the Winter From Hell

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….

Related Posts:

• Step Three of Perfect Workout: Corrective Exercises
• CF Wellness Boot Camp – Introduction
• Step Four of Perfect Workout: Movement Preparation
• Step Two of The Perfect Workout: Just Move It
• Step One of Perfect Workout: Rolling

If you are interested in the class, more information can be found, as well as a direct registration page, here:

Related Posts:

• Almost Six Months Later….
• Sick and Happy Takes on New Meaning
• Engage Fully in Life
• Step Five of the Perfect Workout: Strength Training

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:-)

Related Posts:

• Step Four of Perfect Workout: Movement Preparation
• Step Two of The Perfect Workout: Just Move It
• The Perfect Workout
• CF Wellness Boot Camp – Introduction
• Almost Six Months Later….

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.

Some Other Articles You May Enjoy

• Stability Ball vs Lower Body
• Mindfulness-Based Stress Reduction for People With Cystic Fibrosis
• Disclaimer…and DAY ONE
• Thoreau on Illness
• How Important is “Quality of Life” in CF?

I was going to wax prolific on how it is actually easy to use other objects to “anchor” the mind, and how wonderful it is to start each day with a relaxing (usually) and centering meditation practice, without even thinking about the breath.

Then, as I always (sadly) do before I started to write, I checked my email.  There I saw the following press release , and I literally lost my breath.

Vertex Announces Results from Phase 2a Trial of VX-809 Targeting the Defective Protein
Responsible for Cystic Fibrosis
-VX-809 was well-tolerated at all dose levels when dosed once daily for 28 days-
-Statistically significant changes observed in measurement of sweat chloride suggest increased CFTR
activity-
-Data support planned combination trial of VX-809 and VX-770 in second half of 2010 for CF patients with
the F508del mutation-
CAMBRIDGE, Mass., Feb 03, 2010 (BUSINESS WIRE) — Vertex Pharmaceuticals Incorporated (Nasdaq: VRTX) today
announced results from a preliminary analysis of data from a 28-day Phase 2a clinical trial of VX-809 in patients with cystic
fibrosis (CF) who are homozygous for the F508del mutation. VX-809, an oral investigational Cystic Fibrosis Transmembrane
Conductance Regulator protein (CFTR) corrector, was well-tolerated across all four dose groups studied. In the trial, VX-809
showed a statistically significant decline in sweat chloride at both the 100 mg and 200 mg once-daily doses, suggesting that the
activity of the CFTR protein was increased in patients during dosing. Additionally, VX-809 demonstrated a dose response in
change in sweat chloride across the four dose groups. On the basis of these results, Vertex plans to initiate a combination trial
of VX-809 and VX-770, an investigational CFTR potentiator, in the second half of 2010. VX-809 and VX-770 were developed
with support from Cystic Fibrosis Foundation Therapeutics, Inc., the nonprofit affiliate of the Cystic Fibrosis Foundation.
“This Phase 2a trial evaluated the potential effect of an oral compound to improve trafficking of the defective CFTR protein,
and its results represent an encouraging step forward in the development of new therapies to treat the underlying cause of CF
in patients with the most common CFTR mutation, known as F508del,” said J.P. Clancy, M.D., Director of the Pediatric
Pulmonary Center at the University of Alabama at Birmingham and Principal Investigator for the VX-809 Phase 2a trial. “In the
trial, VX-809 was well-tolerated across the dose groups, and statistically significant changes in sweat chloride, an important
biomarker of CFTR activity, were observed at certain dose levels. There is high interest in the CF community in new
approaches to CF therapy, and we look forward to the future exploration of VX-809 and VX-770 as part of a novel combination
regimen aimed at treating the majority of CF patients.”

IT WORKS!

Ok, first if you need a review of what this all means, read an earlier post here.  The big news here is that Vertex 809 somehow “corrects” the trafficking problem of the dF508 defective protein…at least enough to cause a change in sweat chloride concentration.  This is huge! We know that another Vertex drug, Vx 770, potentiates  (enhances) the effectiveness of the chloride channels present at the apical membrane in the G551D mutation, and is now being tested on people with the dF508 (most common) mutations as we speak (read, write, whatever we are doing).  So, if Vx 809 gets the protein up there, and Vx 770 opens it….

Is this the beginning of the end of CF as we know it?

Related Posts:

• A GIANT LEAP FORWARD?
• Sick and Happy Takes on New Meaning
• Living a Medical Miracle: CF Today and Tomorrow
• How I Grew A Lung in 90 Days
• Run, Walk and Roll