Friday, December 7, 2012

How to fit CF in my day?

Schedules and being an amzing multi-tasker!

I don't make a schedule of everything I have to do during the day, but I do have a huge calendar at home with everything I have going on that day: school, work, show choir, play practice, parties, church stuff, etc. I try to get up (and usually succeed) 1.5- 2 hours before I have to be somewhere. I will shower and then do my therapies (albuteral, hypertonic, pulmozyme, and Cayston/Tobi) while drying/styling my hair and putting on my make-up. I pack my huge bag my mom made me, which fits my therapy machine, my textbooks, a change of clothes for dance practice, and my "lunchbox (I store my meds stuff in)."

I needed a new lunchbox my old one was too big and I'm not sure where it went... oops. So I bought these:

I put 2 small ice packs ( $1 each at most stores) and the cold meds in the tops zipper part and then put the containers on the left in the main part of the lunchbox. I put my albuteral & hypertonic med cups in the one container and my Cayston in the other. It keeps things a little simpler throughout the day. I just carry it all with me or store it in my car, depending on weather and where were are!

I'm very excited about ordering my new vest machine which will be like a 4th of the size of the one I have now and the portable nebulizer machine, since the one I carry around now is a little heavy and twice the size.

I try to fit my afternoon albuteral and hypertonic in with my afternoon Cayston med, but depends if I'm at work in the afternoon whether I can all 3 done. Then at night I do my meds again usally while checking email, FB, Twitter, and blogging.

I also eat a lot on the go, so I try to buy things that are easy to take with me. I'm a big fan of cereal for car trips, I'm not a big granola bar type of person (but they would work well, if you like them).

This is one bag my mom made for me, but now that I take more stuff on the go she is making me a new one that is bigger.

Dr. B has me drinking ScandiShakes now at work/on the go.  I make it in a container and chug it. I'm not that fond of the flavor and it never completely mixes, so its grainy. But then I drink gatorade to get rid of the taste afterwards.

So I will keep working at it and I will continue to try to fit it all in! This weekend I'm taking a lot of stuff with me on-the-go, because I'm performing this weekend in a Holiday show.


  1. I am not sure if you do Pulmozyme out of the house, but if not your Cayston months you can skip the ice pack. Cayston can be out of the fridge for 28 days before going "bad". I blog while doing treatments too. In fact, I am doing my Albuterol as I type this!

    1. Thats good to know, right now I'm on Tobi though... But I will remember that for next month! Thanks! And ps, I'm doing my Hypertonic while typing this! :-)

  2. I love that bag. I hope when your mom finishes the new one there will be pics of that too. Have you ever thought of using insulated quilt batting and making a lunch bag that's the right size and would match the big bag? Your mom is so creative I'm sure she'd be able to come up with a great bag for the meds.

  3. A tip for the scandishakes! Do you shake them up in one of their cups? Another alternative is one of those salad dressing shaker things - those are especially helpful because the little thingy inside the top helps break up any powder. If you shake it well for a minute or two, the graininess usually goes away.

    And, I'm doing my nighttime treatments while I make this comment. ;)

    1. Kym: Good idea, but she has lots of Christmas orders, so I probably wont ask her ot make me anything for a while. But that would be adorable!

      Cindy, I use a container I bought, its not ideal, but I just have to chug it odnw while driving to work. I will look into the salad dressing shakers though for sure! Also, I got your email, but have been swamped with final projects, papers, exams, etc. I will be responding soon! :-)