Traveling with Cystic Fibrosis

Remembering everything you need to bring when traveling can be challenging for anyone. As you can imagine, it gets even more difficult when you have an arsenal of Cystic Fibrosis medications and equipment to bring along. For years Jesse chose to ignore CF and skip most (or all) treatments when traveling so we’re just now getting the hang of how to pack everything he needs. After a couple of successful trips this year, I thought I’d share some tips we’ve learned for our CF friends who are traveling for Christmas…

  • We try to pack all medications and related supplies in one suitcase. It just makes sense that this is the best way to make sure we have everything and it makes it easier to unpack when we get to our destination. When we travel by air we keep this as our carry-on bag so that there is no risk of it not arriving when we do. When we travel by car we want to make sure that none of the meds get left in the car if we don’t bring everything into the hotel room, and risk them overheating.

Meds bag

  • Also when traveling by air… we like to get a letter from clinic stating that all of the medications, supplies, and equipment are necessary for Jesse to travel with. The meds bag usually gets flagged and checked out pretty carefully (understandable) and we like to make sure we will get through with the needles and all the liquid vials. We also like to make sure we will be allowed to keep the Vest machine and CPAP machine with us as extra carry-ons since they are too expensive to replace if they were to get lost somehow.
  • Since the last two trips were road trips, I just brought the entire container of weekly vitamins. We were gone for more than two weeks both times and it was much easier to fill the pills container like usual instead of trying to count them all out ahead of time. And of course… it never hurts to bring extra Zenpep!

Vitamin container

  • We like to have a separate cooler, other than our food cooler, for the refrigerated meds so that it isn’t getting opened and closed all day. When get to our hotel I empty the meds into the fridge and refreeze the ice packs for the next day.

Cold meds

  • Lastly, Jesse has gotten used to finding a treatment chair to unload all of his stuff when we get where we’re going. The most important part is making sure the treatments actually get done. It’s hard when you’re busy being on vacation, but he feels so much better during the activities of the day when he has done them.

Treatment chair

That’s what works for us. Anyone else have some helpful tips to share?

Christmas Ornament Exchange

Several moths ago I joined a CF wives group on Facebook. It’s been a great way to get to know so many fabulous women who understand the challenges that sometimes come with being married to a CFer.  The Facebook group has even lead me to meet up with a few of the wives who live in Tampa… we’re all going out again for dessert tomorrow night!

Even though I haven’t met most of the wives in person, I feel like I know know them. I find myself wanting to check up on them to see how they and their hubbies are doing. So, I was excited when one of the girls came up with the idea to do an ornament exchange. Everyone who wanted to participate sent her their address and she assigned us someone to send an ornament to. I shopped at the craft fair to send an ornament off to Jennifer in Connecticut!

When I received a package a package from Amy in Tennessee, I knew exactly what it was and couldn’t wait to open it. Look how cute the package looked too!

Ornament package

She said that she had to break the rules just a little and buy me two ornaments because she thought of me right away when she saw them. I think she picked perfectly… I love them both.

My ornaments

They are on the tree and add to my collection nicely. Aren’t they cute?

Candy cane ornamentFaith ornament

Thanks again Amy!

Cauliflower and Chickpea Stew

This is a perfect meal for a cold, winter day. I had this tasty recipe at a friend’s house several months ago, and have made it several times for myself since then. I believe it originally came from Real Simple. I like that it has many ingredients that I never would have thought to put together. In fact, I hadn’t tried chickpeas before this recipe and this stew renewed my love of raisins!

Start by cooking onion in oil until soft. I also added a little minced garlic, it just seems automatic to start a recipe with onion and garlic.

Onions

Add cumin, ginger, salt, and pepper and cook. Stir until fragrant, plus one more minute.

Spices

Add tomatoes, chickpeas, cauliflower, raisins, and a half cup of water and bring to a boil. Reduce heat and simmer. Stir occasionally until veggies are tender and liquid is slightly thickened.

Ingredients

Fold in spinach and cook for another minute or two. I actually use both frozen cauliflower and spinach in this recipe. And since the other main ingredients are canned, I can always have everything I need on hand for when I need a quick or last minute dinner.

Spinach

The stew can be served over rice or is also great on its own. It’s perfect for the holidays because it looks kinda Christmassy!

Stew

Here’s the recipe:

2 tbsp olive oil
1 medium onion
1 1/2 tsp. cumin
1/2 tsp. ginger
1-28 oz. can tomatoes
1-15 oz. can chickpeas
1 head cauliflower, cup up
1/2 cup raisins
1-5 oz. package of spinach
rice to serve over
almonds to sprinkle on top (optional)

Enjoy!