Della Anne shares her experience living with cystic fibrosis while pursuing her love of travel. She talks about the challenges of managing her health on the go, the importance of planning and rest, and how she’s learned to balance joy with preparation on every trip.
Transcript
I’m Della Anne. I am a 34-year-old with cystic fibrosis. CF has held me back in a lot of ways, but I never allowed it to hold me back from traveling.
I just kind of decided with my health, I already had to give up a lot of sacrifices, like working full time and missing social activities or being in the hospital more. But when it comes to travel, like, I’m not going to let it as best as possible.
I’ve been able to go to California, Catalina Island. I’ve been able to fly to Paris. I’ve driven all up and down the East Coast, including like a two- to three-month road trip in the Northeast.
I don’t ignore my CF, but I make it work for me in those travel situations.
First of all, when it came to like my schedule before and after, like pre and post the trip, I always put in a day or two of rest and prep. Before, just a rest day or two, and coming back a rest day or two if possible, because then also I can save up to give all my energy on the trip.
When it comes to further away, like flying to California, I mailed my medicine that had to be refrigerated because it was just way easier to mail them in an ice cooler rather than traveling on the plane and in case your luggage was lost, things like that.
Also, for planes, I actually did this pre-COVID. I’ve always worn a mask. Even healthy people, that’s the place where you get sick. When you go to places where they’re heavily crowded and indoors, like on the cruise, waiting for the elevators or in the elevators, I wore masks too. And it’s not fun wearing a mask, but my thought process there is like, “OK, well, if I can stay healthier for longer, this mask for an hour or two is worth it.”
I always pack an extra bottle of pancreatic enzymes and extra of the big medicines, insulin, things like where they’re prescription, like. You could get them in another pharmacy, but it’s just difficult. So just in case I get stranded somewhere, I have those main medicines for at least a couple extra days.
If I’m really tight on packing things, I will typically wait till I get to like my destination and I’ll buy like things over the counter I can get. Like if there are certain vitamins or like Miralax.
When it comes to traveling and Miralax, if you’re going on an airplane, 98% of the time, they take it out and search for all to see. And I’m like, “I promise I’m not putting like crack cocaine in my Miralax, my poop medicine.” And then you say that, it just draws attention. So if you don’t want the attention, put it in your checked-in bag.
And always, whenever I go somewhere, I always look ahead of time at where the local, nearest ER is. Hopefully never have to use it. But when I went to Paris, even then I looked at where it was so I had an idea.
And I even have like on my Notes app, a printout of medications, the names, the reasons, the dosages, all these things — my allergies, medication-wise, my pharmacy — just having all your medical information available so that if you do get into a bad enough emergency situation or you’re just in too much pain, you can show them. Or if it’s in another country, they can have it and then they can take the time to translate it.
Because also then you’re not there thinking about it. You know you want to — when you go on your trips, you want to be focused on having a good time.
Something I have realized and accepted with CF, and probably had a few like grieving moments about is, you know, everyone goes on vacation to escape from the world and everyone needs that. When you have a chronic illness, including cystic fibrosis, you don’t get a vacation from that. You never do. And that’s just the realistics of it. But then at least you can have all that prepared before.
It’s important to do as many treatments a day, but also give yourself the grace that you want to sometimes enjoy a little bit more instead of doing a treatment. So I shoot to do my treatments at least once a day. Bring enough to where I can do it twice a day.
It’s kind of like the whole, everyone packs like 20 pairs of underwear, as if they’re going to poop their pants like three times a day on a trip. Same thing with medicine. Just bring it where like, you know, I’m going to do this many. And if you don’t, don’t give yourself a hard time. And just rest as much as possible.
I know when I went to Paris, we had a short amount of time. We had something in the calendar every day, but even if it was like an hour in the hotel room, I would just lay down and rest.
And if you’re traveling with someone, whether it’s a friend, a partner, a parent, help inform them of what to do in case there’s an emergency. Some people will take it as like you’re kind of nervous the whole time, but you’d rather someone be aware than when these things happen, just kind of have no clue. I think it’s kind of actually like a kindness thing to them.
I know a lot of CFers are very independent, but also at the end of the day, it takes a village and it’s OK to rely on your village for these things.
CF is going to never just disappear from our thoughts, what we physically feel. But that doesn’t limit us on being able to enjoy things. We may not be able to do as much, but find something that would bring you as much joy, especially on your vacation. Be aware, be prepared, but don’t be scared and have fun.
