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

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...

Calling All Who Care!

     Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART!  First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...