Breck, a CF mom and author of In It for Bennett: Our Journey with Cystic Fibrosis, has been part of the Folia community since June 2018. In this blog post, she shares with Rebekah their one-year update, advice for new families, and tracking in sickness and health.
One-year update since “System Failure”
Rebekah: You shared in “System Failure” the challenges of juggling priorities as a caregiver. How have things been since?
Breck: Good. We definitely are in a different place because I finally was able to figure out some things that worked. Folia was really critical in helping me to master that. I could get a couple of things figured out but I would lose track of a couple of things, so I just couldn’t get it all. And fortunately, CF has “behaved.” I think that’s the thing - you get your systems figured out and CF decides it wants to introduce something new.
Advice on Back to School: establishing and sticking to new routines
R: It’s back to school season. Do you have any advice on establishing new routines?
B: I draw from the work that I do with the Cystic Fibrosis Learning Network. My advice is try to figure out what works and, when it doesn’t work, be prepared to figure it out again, and again, and again, and again. Try to address different parts of the system that aren’t working. What’s nice about Folia is that it keeps me focused on the outcome. Because I will change the system, and I will go back to Folia and say:
“Well, did I get it all?”
“Okay, I will change this part of the system.”
“Did I get it all?”
And I’m able to do repeat the process. I needed to have something that helped me monitor whether I was successful in making changes, and Folia was able to do that. Continue to be patient with yourself because what you’re asking from yourself is so much, especially when you’re dealing with CF. It’s a lot.
Advice for new families: start small, identify your main goal, and don’t stress about tracking every day
R: Do you have any advice for patients and families who want to start tracking symptoms and treatments at home?
B: First, start in small increments, and add things over time. Track either the thing that you know you’re going to be most successful at, so you can start feeling like you’re successful. Or maybe track the most important thing that you want to make sure you don’t miss. Or track the thing that you’re having the hardest time with. But definitely don’t try to track everything.
Second, identify your goals. What I track most are behaviors and the symptoms, and when we’re well, we just don’t have symptoms. My friend really likes the ability to track symptoms on Folia because she really wants to use it for sick tracking. Are you mainly trying to work on getting all your meds in? Are you trying to do your treatments? Or are you trying to identify what might cause problems? I think asking these questions is helpful because trying to do it all is very overwhelming.
R: Those are really good tips, thank you! How does tracking fit into your routine?
B: Nell really helped me with this. You don’t need to track every day, you just need to track regularly. Even if you did all your tracking on Sundays, you’re still capturing it over time because you’re really wanting to look at the data in long periods. I would suggest doing it every day if you possibly can, but whatever you do, do something. If it’s every other day, once a week, get it done.
R: That’s a really good perspective because even a once a week tracking is significantly better than the current system, which is just at clinical visits.
B: Right! Exactly. Even a week! And you go, gosh, I could do a week. Right now we have nothing.
Tracking in sickness and in health
R: Is there anything else that you want to share with other patients and families who manage CF?
B: I would communicate that Folia cares about the community. You really listen - you guys are very quick, and responsive, and I really appreciate that. And there is nobody else doing this. Also Folia is a tool that I can use to monitor his health, just like my son’s EMR portal and my doctor’s advice.
Also, I have to be active and participating in order to be able to benefit from Folia. It’s not going to just happen for me. That the more I stay in it, the more I’m able to get out of it. I think it’s a lot harder for me to do right now because Bennett isn’t sick. I don’t want to think about CF most of the time. I want to be done. Put the mask on my kid, give him his medicine, turn the feeding pump on, and move on with my life. But again, you track when your child is well, so that you can identify when he’s sick. It takes a lot of self-control and ability to think through that, because when he’s sick, I’m desperate for Folia. But at that point, if you haven’t tracked, then you won’t have the benefits of that. So I think it’s important to use it to its full capacity.
R: Right… Bennett is not just a CF patient. He has tornado themed birthday parties, and… I think he’s almost turning ten this year?
B: Yeah, he is!
R: We’re glad to be one of the tools you have to manage the CF part of life and then move on to the birthday parties and all the other excitement of being a ten year old.
B: Absolutely. And you know, taking two minutes out of your day to do that, to be able to make it easier when he’s sick - that’s well worth it.