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Packing for Vacation Is Huge with Cystic Fibrosis

June 12, 2010

PackingWe are off to the Smoky Mountains at 6am Saturday!

Preparation started days ago with the clothing and suitcase items, but now Beautiful is sitting at the table filling my weekly pill container for next week after dumping tomorrow’s meds on the counter for me to take in the morning. We’ve got a box of snacks for Day 1 of driving, Day 2 of driving, and a stash to keep safe for our drive back home so we don’t eat it all while we’re there. I think I’m supposed to down about 20,000 calories on Day 1 of driving by the looks of what we’ve got in there!

Since eating is a full-time job for me, we went over the menu for the week since there is a full kitchen and are taking turns making meals. We figured out what things we needed to supplement with more food for me without bothering everyone else. Wouldn’t want the whole family coming home rolly-polly now, would we? Some days, it was an omelet after breakfast, others, it was a snack or a Stouffer’s lasasgna. I’ll be taking Megase all week, so the eating extra really shouldn’t be a problem, and since my biggest fear is losing weight, we are taking care of that. If all goes well, I’ll be fat and happy when we get back next weekend.

We’ve packed the Vest, put nebulizer vials in baggies for either the box or  cooler, filled the pill container, gathered my enzymes, set out my inhalers, and put my eFlows on the armrest of the couch instead of properly back in their place in the basket. I gathered any possible narcotics I might need, as well as my Ambien for a really good night’s sleep every night.

Beautiful was really surprised that I wanted to bring my Vest along because of my strong determination to be normal, but it makes such a difference now that I’ve been doing it, I don’t want to risk having a week-long wheeze just because we left it here. It comes with a nice travel roller for the airports and everything, even though we’re driving. Where I’ll do it or how we’ll work out when I do it is still up in the air, but we’re bringing it.

Monday will be a regular installment of “Things CFers Do” followed by the week’s activities if no one minds non-CF articles. Speak now or for the rest of the week, hold your peace.

Simple Tips for Extra Calories

March 5, 2010

Once you realize how easy it is to add hundreds, if not thousands, of calories per day, you’ll never look back. One of the most tiring parts of having cystic fibrosis is the massive amount of food that must pass through our bodies each and every day, just to maintain weight. Gaining weight is a whole new ballgame. The best way to turn the tables on this overwhelming task is to add calories to the food you’re already eating. Here is a run-down of my tips and tricks. Some are not going to be the best if you already have CFRD or are on a serious diabetes diet to avoid full-blown diabetes. Any massive amounts of sugar and starch in my diet is enjoyed as a treat rather than a staple.

  • Drink milk with your dinner? Add chocolate syrup to tack on an extra 200-300 Calories.
  • Cook with a bit more oil than usual. Olive oil is a huge source of fat calories. If you’ve got a “normal” spouse, this may necessitate preparing food in separate pans, but it’s well worth it to gain weight.
  • Drink extra calories with something like Boost Plus or Ensure. I hated the taste of so many drinks, but I finally found one I like. At 350 Calories each, three per day adds 1,050 Calories that can chase down a meal no matter how full you are.
  • Mayonnaise can be your best friend. 1Tbs of mayo is 110 Calories. It can go on sandwiches and makes a creamier sauce. Same goes for:
    • Sour cream
    • Butter
    • Ricotta cheese
  • If you snack with low-cal or empty calorie items, replace them with things that get you the most calories per ounce (or even per dollar). Chips, Combos, Oreos, and Hot Pockets are my favorites at the moment. Roll with your taste.

What are your tips for adding extra calories without feeling like a human garbage disposal?

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