CF Suitcase

Standard

It’s been a while since I’ve been by!  First an update. Things are going well! I’ve been feeling great and have kept up with my running. I’m still running two miles three times per week and am slowly trying to reduce my time.  My current best is 26 minutes 33 seconds which I got on the treadmill this week.  I was able to run outside several times due to cooler temps which was great!  Here were my last three outdoor runs:

  
I was intruiged that my time got better by 11 seconds each time. I’m hoping to get my time down to 25 minutes for the two miles. It’s going to take a few weeks but I think I can do it. 

I wear my breathe bracelet every time I run. It reminds me of all those loving people in my corner who give me support, encouragement, and help. It reminds me of Jaime and Lucas and the rest of my family who need me to be as healthy as I can be. It gives me a feeling of solidarity with all those CFers who work hard and struggle to stay healthy. It is motivation to push through the tough moments.

Summer has been great! Lucas is enjoying preschool and I like working during the day rather than in the evenings. Jaime has a break from soccer coaching for the next few months as well so we have more family time than usual.

We are heading out for vacation soon and today I got busy packing. I don’t know anyone that loves packing. Unpacking is even worse! For a CFer, it’s practically impossible to pack light. Since cystic fibrosis doesn’t take a vacation, there are lots of things I need. Take a look at the “extras” that I have to bring along to manage my disease:

  
I have my air compressor and nebulizer kits for breathing treatments, two inhaled medications, my anti-fungal drug, child-strength super sunscreen to combat the photosensitivity caused by the anti-fungal drug, a medication to reduce inflammation, two CF-specific vitamin supplements, digestive enzymes, a cooler for the medications that need refrigeration, two inhalers, an airway clearance device, and supplies for sinus rinses.

The orange and green bands are for my posture exercises. The body’s natural inclination is to roll the shoulders forward to combat shortness of breath, and these exercises are an attempt to keep proper posture in spite of my breathing issues. The jar is full of water kefir (a probiotic drink) which helps me manage the stomach issues associated with CF. (My friend Joyce taught me how to make it and gave me a starter. Click here to see her recipe for water kefir if you’re interested!) I drink a little with each meal and it helps my digestion.

You may notice that I included workout gear and shoes with my “extras.” That’s because as much as I might want a break, I can’t afford to take a week off from exercising if I want to keep my lungs clear. Thankfully the resort where we’re staying has a very nice workout facility and therefore I have no excuses!

CF requires its own suitcase. But I’m grateful that my gear is portable so I can enjoy some time away with my family. I’m all packed…now to survive the nine hour drive with a three and a half year old.  Thank goodness for iPads and orange tiger headphones!

  

Advertisements

4 thoughts on “CF Suitcase

  1. Jacqueline L.VanEerden

    AWESOME ! Thanks for sharing ! We understand about the packing ! Your reminders are so good….that if my lungs are ” yucky ” from asthma….it’s usually better to push through where I can and garden…( favorite exercise )…and that will help in the long run . HAVE A GREAT VACATION ! πŸ’—πŸ’™πŸ’™

  2. Colleen

    Betsy,
    I’ve been following your blog and have particularly liked your running entries. I’m glad you are feeling better and able to make strides toward your goal. Ryan’s swim team did a laps for CF fundraiser yesterday and I couldn’t help but cheer those kids on with you in mind. Keep up the great work and enjoy your vacation. You are an inspiration.

  3. Debbie

    I have heard of Kefir before – a friend at work buys it by the bottle…. I’m so glad that there is a way to make it at home! Thank you for sharing – and so thankful that your running continues to go well!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s