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

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 ...

Oh the Joys of a Colonoscopy!

Colonoscopy, Fun: As you may remember from reading my October Posts (  Oct Post #1   &  2nd Oct Post ) that I was admitted a second time that month for Gastrointestinal issues. I was having stomach cramps and what was believed to be Antibiotic Associated Diarrhea. However, CT scan revealed my colon and intestines were inflammed.  After having a rough 2 months of GI issues, and cuting out most food (diary, meat, grease, carbonated beverages, and sugar). I finally am getting a Colonoscopy to see what in the world is going on! I'm been taking Probiotics, was on meds for both C. diff and AAD. I even added driking Kefir to add to the probiotics and good bacteria.  Only now am I seeing any changes, less stomach aches, etc. I add a 1/2 cup pf the Kefir to my smoothie, its not bad -yum! I really reccommend it and Probiotics (so talk to your doctor about it), it could really help you out! Read about Colonoscopies here! So I'm glad to be g...

What Else Should I Do?

Need Some Feedback.       May has almost come to an end. I love May, nice weather, summer starts, AND its Cystic Fibrosis Awareness Month! A lot of the CF walks are in may and its a great time to raise funds and awareness for CF! However, I'm also excited that it will be June soon! June 28th is the Princeton Cystic Fibrosis Walk. I've helped organize other events in the past. Whether for school or other non-profits I've volunteered at, but this CF Walk is a little different. It is the first time, I've put together a City event. Or put together an event that is so near and dear to my heart. I'm so thankful that I had so many people sign up so quickly. Pretty much everyone family member I have on my mom's side signed up the first day. And I've have had some family and friends help me (giving me ideas, helping me recruit, etc). But, Its the first time I didn't have a committee or team behind me to help execute the ideas and actually plan the event. I lo...