CF = Coffee Fanatic


Disclaimer: No child *actually* drank coffee during the writing of this blog post.

Hmmm, coffee.  I love it.  I have always enjoyed coffee, but ever since Lucas reached the perpetual motion stage, I have been drinking it religiously.  I need something to help me keep up with that kid.  Jaime recently accused me (on Facebook!) of being a coffee addict.  It had something to do with this headache I couldn’t get rid of until I had a cup.  I would prefer to categorize myself at a coffee enthusiast.  Maybe even a coffee fanatic.  But surely not a coffee addict…

Although I love hot coffee, I don’t need any extra heat in my life during the summer.  So lately I’ve been making a frappuccino type of coffee drink that I created with three simple ingredients: coffee, coconut milk, and raw honey. It’s very tasty, refreshing, and good for you.

Don’t put a dried flower in your coffee drink; I just thought it made the picture pretty.

Coffee has some specific cystic fibrosis related health benefits.  It is extremely high in antioxidants which boost the immune system.  The caffeine in coffee is a natural bronchodilator (a substance that helps open up the airways and increase airflow in the lungs).  Coffee may also protect against diabetes which is a common complication for CFers, especially for those of us over 30.  Although there haven’t been any recent studies, I am pretty sure consuming coffee reduces the number of Mommy Tantrums (and helps moms deal with toddler tantrums).

Honey is a healthy alternative to sugar.  It has vitamins and minerals and is high in antioxidants.  Regular sugar causes inflammation but honey fights against it.  It is antibacterial and has shown to be effective against both staph and pseudomonas which are common CF colonizers.  Many people claim that regular consumption of local raw honey helps immunize against seasonal allergies.  Honey is also very soothing to the throat which is nice for those of us who cough a lot.

The finished product.

The finished product.

To make this drink, simply combine eight ounces of freshly brewed coffee (cooled to room temperature) with four ounces of coconut milk.  Then stir in about a tablespoon of honey.  It will take a bit of stirring before the honey dissolves.  If that bothers you and you don’t mind extra dishes, you can make it in a blender.  When you’re done, pour it into a pretty glass; it tastes even better that way.  For best results, enjoy first thing in the morning.  And after lunch.  And maybe once more before dinner…


Operation Lace Up Update



I completed one week of Operation Lace Up and am here to report.  Things went better than I expected!  I knew that running was going to be very hard.  And it was, but it was doable.

The Couch to 5K I’m modifying specified a minute and a half of walking followed by one minute of jogging.  I set my treadmill to 4.2 mph which works out to be a 14-minute mile pace.  I kept it the same for both the running and the walking portions, and completed 21 minutes which worked out to be eight 1-minute runs and nine 1.5-minute walks (a total of 1.5 miles).

Before each workout I did a breathing treatment and airway clearance to make sure that my lungs were as clear as possible.  It’s very frustrating to have workouts interrupted constantly by fits of coughing.  My muscles didn’t have any problem with the walking and jogging.  I must have a decent base level of fitness (thank you, Lucas).  It was a challenge to breathe and I felt each and every breath I took.  I had to work hard to pull in as much air as I could and then push it back out.  It was a very deliberate.  When the airways are constricted due to inflammation, congestion, infection, or scarring, the air simply does not move in and out as easily as it should.  I’m thankful I don’t notice every breath I take during the normal activities of my day, but I sure did while exercising.  It was a challenge but I never felt that I had to stop or that I couldn’t finish.  That was very encouraging!

Usually when I work out on the treadmill I watch TV to pass the time.  However, because I had to watch the the clock so closely, I listened to music this week.  A really good, upbeat tune sure helped me push through.  Does anyone have specific songs that they like to listen to when they work out?  I’d love suggestions as I haven’t updated my music for years!

This week I am supposed to do a 2-minute walk followed by the 1.5-minute run.  It sounds manageable.  I’ve got to get my first workout done tonight so I’d better go lace up!

Operation Lace Up



I’m happy to report that Operation Up Scale is completed!  Surprisingly, after plateauing for a few weeks, I gained the extra pound and another half pound to boot!  It’s time to start working on my next goal, Operation Lace Up.

I mentioned in a previous post that I used to jog but I haven’t for several years because of pregnancy, childbirth, and general lack of extra energy due to caring for my active boy.  I am feeling strong right now and am ready to give some planned exercise a try.  I’m going into this realistically, however, and if I need to pull back because it’s too much, I’m willing to do that.

There are several reasons why I want to get back into exercising.  Exercise is good for everyone, but it is especially good for CF patients.  It is one of the few things that can actually increase lung capacity.  It also strengthens the body and the immune system.  A strong body means extra endurance for the challenges associated with cystic fibrosis.  And exercise is a natural way to clear the airways of excess congestion.

Exercise is also good for bone density.  People with CF are prone to osteoporosis and osteopenia.  This is because nutrition, lung disease and bone health are related.  If a CF patient has poor nutrition due to malabsorption or low appetite, the body does not get sufficient vitamins and minerals which are essential for strong bones.  Lung infections cause inflammation which can also lead to bone loss.  Sometimes CFers are inactive for periods due to illness and this weakens both muscles and bones.  If that weren’t enough, some common CF medications such as steroids and appetite stimulants cause bone loss.

When I first started thinking about exercise I was considering doing a Couch to 5K program.  However, after careful consideration I’ve decided that running three miles is not necessary for me.  Before my pregnancy I was running and my fastest pace was a 13 minute mile.  In other words, it will take me nearly 40 minutes to run a 5K once I work up to it, and that’s too much time and energy to devote to running right now.  My doctor has stressed in the past that 20 minutes of consistent aerobic exercise will give me all the benefits I listed above.  I don’t need to do more than that.  I don’t want to have to cut back on all the activities I do with Lucas just so I can run a 5K.

I’ve decided my goal will be to run two miles, about 25 minutes of jogging for me.  I found a Couch to 5K program online and am using it as a guide to help me get started, but I’ll be stopping at the two mile mark.  It combines jogging and walking.  At first you walk more and as the program proceeds the ratio changes until you’re only jogging.  If the pace is manageable, it will take me about six weeks to work up to running two miles.

Lucas picked out some awesome pink running shoes for me for my birthday.  He was very excited to give them to me.  He will be happy to see my wear them.

imageI’m ready to lace them up and hit the road!  This is going to be very difficult for me.  I know that.  When I get discouraged I’m going to glance down at my bright feet and think about my boys.  I’ll remember how much they love me, how much I love them, and remind myself that many worthwhile things in life don’t come easy.

Improving Airway Clearance by Leaps and Bounds


Airway clearance is a very important part of staying healthy when you have cystic fibrosis.  Because of the basic defect, CFers have thick mucus that can build up in the lungs.  I do respiratory therapy twice a day to combat this problem.

There are a few different methods of airway clearance.   One method is called P&PD, percussion and postural drainage.  With this method, the body is angled to help the lungs drain and the lungs are percussed with a cupped hand to loosen mucus so it can be coughed out.  I remember my mother doing this daily on my sister Sheri when we were young.  We called it thumping.  I also utilized this method during and after my CF health crisis in 2007, but it’s a bit tricky to perform on yourself.

A second type of airway clearance is to use an airway clearance vest.  I can’t knowledgeably report on this method because for various reasons, my doctor feels that other techniques are more effective so I don’t have one.  However, I understand that the vests use air compression to increase airflow in the lungs and loosen mucus which can then be coughed up.  One benefit of this method is that you don’t need someone to perform it on you like with the P&PD and you can do other things simultaneously like complete breathing treatments, read, or blog (who doesn’t love multitasking?).  Some patients do vest treatments for hours each day.

A third method is called PEP therapy.  PEP stands for positive expiratory pressure.  In this method, the patient breathes into a device which provides resistance and vibration.  The positive pressure generated by breathing through the resistance opens the airways and helps air to get beneath pockets of congestion and the vibration helps loosen the mucus so it can be moved to the larger airways where it can be coughed out.  This is the method I use most often.


You might think that asking your husband to take a picture of you doing airway clearance is a simple request, but this photo shoot deteriorated rather quickly…

I do this twice a day after using a bronchodilator to open my airways and saline solution to lubricate them.

Recently, I have implemented a new technique for airway clearance…jumping!  I stumbled upon some articles that reported that jumping is an excellent way to loosen and clear congestion.  It has been researched mostly as a method for children because other types of airway clearance may be difficult or unsafe.  Plus, jumping is fun so kids like it.  Enjoyable airway clearance is not a bad idea for adults either.  I decided to try it and I am loving it!  We bought a little trampoline and put it in the basement.

imageI have been doing my normal breathing treatment followed by the PEP respiratory therapy and then jumping on the trampoline for about 15 minutes each morning.  I have been surprised at how much congestion I’ve been able to bring up.  It’s not uncommon for me to cough up as much or more than I do performing the PEP respiratory therapy.  If I need to cough hard, I just hop off and sit on the side.  It is great exercise, but because I’m not using it in that way, I don’t get frustrated if I need to step off for a moment.  I feel exhilarated and joyful when I jump.  Maybe that’s because it makes me feel like a kid again, or maybe it’s just adrenaline and endorphins, but either way, it sure beats lying in an awkward position and pounding on myself.  It may not be an official method of airway clearance, but it works great for me!

Operation Up Scale Update (and the zoo)


Things are going well with Operation Up Scale.  I’ve gained four pounds which is just a pound shy of where I’d like to be.  I’m having a difficult time getting that last pound on and I suspect I will have to add even more calories to my daily intake if I want to gain it.  My body seems to be resisting more weight and it’s hard to know how much to push.  I feel comfortable at my current weight, I just wanted a little extra cushion 😉 because I’m hoping to add focused exercise into my life soon.  I often drop some weight when I start a new exercise routine.  But 3200 calories a day is about all I can stomach :).  Okay, enough with the puns!

It also seems that in order to maintain this higher weight, I will have to continue eating this much.  I’ve been at my current weight for several weeks now in spite of the higher calorie intake.  Between my CF needs and active days caring for my boys, I must be burning lots of calories.  I get tired of eating, and I’m not thrilled about continuing at this rate, but if this is what my body requires, I just need to do it.

The calorie counting (made tolerable by MyFitnessPal) has caused this process of gaining weight to be so much easier than it ever was in the past.  It has kept me on target.  And it has shown me some of my shortcomings when it comes to getting enough food.  For example, last week we went to the zoo.  We had a great time!

Lucas liked the fake animals almost as much as the real ones!

Lucas liked the fake animals almost as much as the real ones!



Lunch Break!

Lunch Break



I ate a good breakfast before we left.  I packed a decent lunch.  But a zoo trip takes a lot of energy!  I pushed Lucas around in the stroller.  I lifted him up to see various animals.  I chased him around on the playground.  And we walked a lot (we clocked it later and it was nearly two miles) to see all the exhibits.  It was also very hot and humid at the zoo (a big appetite killer for me) so in spite of all that activity, I didn’t feel like snacking.  I ate a good dinner but not a high calorie one.  I had an event in the evening, and when I got home I realized I hadn’t inputted any calories for the day.  When I finally did, I was almost 1000 behind my goal!  Thank goodness for Trader Joe’s dark chocolate peanut butter cups; there’s 200 calories in just three.  With those and a few other (healthier) high calorie choices, I was able to make up the difference before bed.

This type of deficit is common for me if I’m not mindful because we are out and about a lot.  If I don’t pack plenty of snacks, I don’t get the calories I need.  I’m working on being better about making time to take care of my own needs before leaving the house, not just Lucas’s.  I never forget his snacks, but I forget mine quite regularly.  So next time we are out, whether we are at the zoo, a museum, the park, a play date, or the pool, I’m bringing along my peanut butter cups!  And maybe some other snacks too.