• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

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Traveling with Cystic Fibrosis

I am beginning to feel a lot of anxiety as I think about traveling with Cystic Fibrosis.  It is sad to admit, but in the last almost 5 years of being blessed with the gravity and intensity of this amazingly difficult disease, I can count on one hand the trips and times that we have stayed away from our home.  Crazy!!!  As much as I always thought I would be a world traveler after visiting China a couple of times…kids,  life and a disease have set me back. =)  So, now as I look at leaving our home, I am overwhelmed.  The last two times we have left I have forgotten or been ill-prepared with at least one of Rachel’s medications (lucky one of those times we were only gone a day), but one time I just miscalculated the amount of med’s she would need and had a nightmare trying to locate it in a strange city!!!  THERE ARE A TON OF MED’S JUST FOR ONE DAY!!!!!

I am praying for God’s strength and clarity of mind in organizing, packing, and preparing for several scenario.  I need to call the doctor and get an antibiotic in hand just in case (our dr’s recomend this since it can be difficult to try and locate a pharmacy that may or may not have her med’s in a strange city). The thing about Rachel’s cf is that when she gets sick, it usually turns from okay to very bad quickly.  She has been known to go from breathing fine in the morning to gasping for breath at night.  It is scary to say the least.  Although vacation is suppose to be fun, we all know that we come back tired from the change or schedule and usually a worn out.  The same is true of Rachel I am sure. So, if you would please pray for us in the preparations, travel and good health along the way.  Sickness and vacation don’t go hand in hand, especially with CF.  It doesn’t mater for us if it is being gone for a day or a month…it is all about finding a rhythm “on the run” that works.

We also have the whole allergy thing.  That one makes me super crazy.  Having a life threatening egg allergy along with CF is tough. We know just one bite of something that contained egg will send her more than likely into a full anaphylaxic shock (not breathing, and heart stopping, we have seen in happen once before).  SO EVERY BITE OF EVERYTHING IS SCRUTINZED!!! We have found eggs in jelly beans, and chicken nuggets, and breads, and slushies.  So, the stress of food, is a big, and immediate one.  The comfort and safety of home and food that is safe is relaxing.  So, we begin our journey of finding places along the road that we can eat, and the all time not-so-favorite thought of eating from a grocery store.  Paul and I laugh that is one of our favorite things (before allergies) about being away from home.  NO NEED TO WORRY, JUST GO OUT TO EAT!! =)  Now that phrase comes with a lot of questions, prayers and concern.

So tonight I began praying for my clarity of mind as well as the ability to get all the things ready that i need to.  Thankful that God is able.  I am also glad that my inabilities and weakness are made perfect through the power of Christ.   God is able.

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