Skip to main content

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.

Comments

  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!

    ReplyDelete
    Replies
    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! :-)

      Delete
  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.

    ReplyDelete
  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. ;)

    ReplyDelete
    Replies
    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! :-)

      Delete

Post a Comment

Popular posts from this blog

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...

Craft Show and Work.

Craft Show This Saturday is the Craft Show! Mom and I will be selling our stuff there! It's at Liberty Village in Princeton from 11am-2pm! Please come and see all the booths! There will be 20 booths, kid's bouncy houses, games, prizes, raffles, etc. Proceeds from raffles, etc help give the residents of Liberty Village Christmas gifts and a Chirstmas Celebration! I'm excited to do this craft show, I remember going to them when I was younger! I loved it! Mom would take me along and I really enjoyed spending the day with her and looking at all the crafts! Mom is selling lots of hats, some purses, pouches, a couple blankets, teddy bears, etc. I will be doing my usual picture frames, notecards, etc. I will also be selling Michelle's My Bubble Products! To see some products: A Few of Mom's products -> Click Here!     Michelle's My Bubble products -> Click Here!      My mom said she is going to set aside a portion of her profits to ...

Blog Around the World

Linking Blogs Around the World: Last week I was contacted by my friend Kymberly at  Peas in a Pod Creations  to participate in the Blog Around the World Posts.   Pic: Me, Kym (the Bride), and here sister, Stephanie!   While Kymberly doesn't have Cystic Fibosis, her blog is an outlet for her beautiful quilts and other sewn, knitted, or quilted projects. Kym and I not only were best friends in high school, but we were next door neighbors. (like she said in her blog post) We lived exactly 18.7 feet from each other and some summers we spent literally the whole day 9am-9pm together hanging out! So of course I was thrilled for her to invite me to do this posting challenge.This is a great way for bloggers, like myself, to share our favorite blogger pages that we visit. Here are the ?s that came along with the post. What am I working on? How does my work differ from others in the same genre? Why do I create/Write? How does my writting process work? Hopefully, if you a...