Traveling with a rare disease isn’t simple—especially when your medication has to stay cold. In this episode, I share the real challenges of flying with Mycosis Fungoides, from packing syringes and sharps containers to navigating TSA rules. I talk about the hotel fridge disaster that forced me to upgrade to a TSA-approved cooler and why planning ahead is the key to stress-free travel. Most of all, I remind you: don’t let fear of complications keep you from seeing the world.

Traveling With a Rare Disease – Ep. 21 – The Fine, But Not Fine Podcast

Traveling with a rare disease isn’t simple—especially when your medication has to stay cold. In this episode, I share the real challenges of flying with Mycosis Fungoides, from packing syringes and sharps containers to navigating TSA rules. I talk about the hotel fridge disaster that forced me to upgrade to a TSA-approved cooler and why planning ahead is the key to stress-free travel. Most of all, I remind you: don’t let fear of complications keep you from seeing the world.

Transcript

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, health care battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences, and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Y’all, today, I want to talk about something that’s both exciting and stressful when you live with a rare disease like I do, Mycosis Fungoides, and that’s travel. And most people think of travel as you pick what you’re going to do, where you’re going to go, you pack your clothes, you grab your toiletries, you make sure you didn’t forget your charger. But when you have a disease that requires medication that isn’t standard, so think things like refrigeration, syringes and all the things that go with that, travel gets a little bit more complicated. And I’ve learned that you can’t just throw your meds in the suitcase and trust everything will be fine. And today I want to walk you through what I’ve experienced and learned and how I found ways to make travel possible and enjoyable without really risking my treatment.

Now when I travel, my suitcase looks different today than it did before. Alongside all those normal things, I have refrigerated medication, Pegasy Interferon, syringes, alcohol wipes, a sharps container. Sometimes I have ice packs, depending on how I am traveling with my medication. And that’s this is really my kind of other luggage, right? And the stress isn’t just the have I packed it all right? Did I forget anything really, really critical? It’s the mental load.

How will my experience with TSA be? And honestly, they’ve all been fabulous. What if my ice packs don’t stay cold long enough? What if the hotel fridge doesn’t work? And I’ve experienced that one, and I’ve I’ve learned how I’m going to deal with that in the future.

And that’s because recently, I was staying someplace, checked they had a fridge. I’m like, awesome. I am golden, right? I checked in, I unpacked, I put my meds inside the refrigerator, and thought, I am fabulously good. This was easy, breezy, right? The next morning, I opened the door the refrigerator and realized it was not cold enough, and I couldn’t make it any colder. So, fortunately, my medication has a long period of time it can be out of refrigeration before it goes bad. It can be up to like, I think, 24 hours. So this was, you know, pretty much like 10 hours that had been like that, and I was close enough to my regular time to take it that I just ended up taking it a little bit earlier. And it’s a big deal, because that medication costs more than $4,000 and it would not have been ideal to have to chuck it right. But this was also the moment I decided I am no longer relying on hotel refrigerators. They’re inconsistent, and really they’re just mini bars that barely keep a soda cold most of the time.

So after that refrigerator encounter, I started doing a little bit more research, and now I have purchased one of those TSA-approved insulin kind of transport containers. It’s a refrigerator, and they’re really pretty brilliant. It looks like the one I bought, looks like a fat thermos, and it runs on either a rechargeable battery pack, or you can plug it into a USB outlet in a hotel, at home, you can plug it in your car, and it will keep your medication at a safe temperature as long as it has power. And by that I mean a safe temperature. I looked into what my medication, Pegasys Interferon, needed to be kept at and for how long, and then you have to make sure that your battery pack can cover that time frame, so that you or you have another battery pack that you have available to use if you’re taking a really long trip.

And really what it is, it’s it’s peace of mind in a travel case. And they’re not inexpensive, but they get the job done. And if you’re like me, I mentioned earlier, my medication was more than $4,000 per dose, you really don’t want to have to throw that away because it hasn’t been refrigerated properly.

It’s also worth noting, if you travel internationally, especially in Europe, many hotels use, I think they call it a power slot, where you have to insert your hotel room key card to activate the outlets and lights in the room normally. When you open the door to the room, it’s right there as you open the door on the wall and you just drop your key in, and then it gives turns on power to the space.

So if you take your card with you, so when you leave the power shuts off. And if you had your refrigerated insulin transport container in there, it would turn the power off to that. So you need to have some other card you can slide in there. It’s a sensor. It doesn’t have to be your room card, and you would just pop it in there and make sure that the sensor reads it, and it would keep power on in the room when you’re not there. And then you would also want to make sure you don’t permit housekeeping in, because you don’t want them removing your card to turn power off to the room.

I really do recommend you take some preparatory steps before you travel. Now I say that from someone who’s a chronic planner, so keep that in mind, but it can be really important. If you haven’t traveled with medication before, right?

Talk to your doctor. Sometimes they can adjust the timing of your medication. They might be able to tell you it’s okay don’t travel with your medication. It may be possible to skip or work around, so don’t just assume that you have to do it. Ask the question, you may not have to

Also take your medications in their prescription bottle or container. Some of my stuff comes in a box with a label on it, and some of it comes in a bottle. And I always travel with my prescription bottles and those labels because they say exactly what it is, who authorized it, when it was authorized, how much I’m authorized to have.

And you know, depending on where you’re traveling, some countries won’t allow you to bring in some medications, so you need to make sure that you’re good. I also take my, you know, my pill containers, so that I don’t forget medications, right? I take them with me, but I don’t populate them or with the medications until after I’ve arrived. I do that as part of my kind of getting settle in.

And I also check TSA rules on medications. They allow them. I mean point blank, they allow them. However, how they want you to present it, any recommendations they may have, whether you have to take it out of the bag or not. You know, they change from day-to-day, week-to-week, month-to-month. So make sure that you’re familiar with them and you’re prepared. Last time I went through TSA, you know, I told them, do I need to let you know I am traveling with medication that’s liquid and syringes

Yeah, no, no, you don’t need to tell us anything. And then after it went through the X ray machine, they’re like, oh, we need to open your bag. And I’m like, Well, you know, I would have, I would have just pulled that out earlier, if you let me know, right? That would have been easier.

I also make a packing list, and I write out my medication, syringes, wipes, you know, I have a travel size sharps container, if I need a cooler bag, or any kind of ice packs, or if I’m taking the power bank, if I’m taking the refrigerated thing, and then I check them off as I get them in the bag. That way I don’t miss it.
And I keep all of my medications and all of the components that go with them in a separate bag inside my main carry on. And that way it’s easy when TSA does need to pull it out, I can just grab that one bag and it’s like, that’s where all of the stuff is, right?

And I’m gonna tell you this never, never, never, never, never put your meds in your checked luggage, never. You do not want that getting lost or stolen.

Now, another thing to consider for traveling, for me is a narrow band, UVB, light treatment. I do light treatment at home. It comes and goes. Sometimes I’m on it, sometimes I’m not on it. I’m back on it again. Obviously, when I’m not at home, I can’t just pack up the light booth and take it with me, right? It doesn’t work that way.

So here’s how I handle it. I just accept the gap. I’m away. I know I’m going to miss my regular sessions. Right now, I’m doing three days a week. Instead of stressing over it, I just plan around it. I essentially plan my restart. If I’m gone for a week and I come back, I am going to dial my dose back down to a lower dose, probably two doses previously. So if I was at 10 and before that, I was at eight, and before that, I was at six, I would take it back to six. If it’s more weeks, I might lower it even more and see how I react to it. If you have not done this before, and you’re doing home light treatment, talk to your dermatologist about how to ease back into treatment after a break. What works for me may not work for you, okay? And I remind myself, life happens. Fortunately, right? Missing a week of treatment for a trip, that’s a pretty darn good exchange. The key is to be really wise about resuming it when I return, because it’s all about making peace with a pause and having a plan for re entry.

Now, travel is really pretty amazing, right? But it can highlight how different life with a disease really is. It can be super, super easy to slip into the mindset of worry, right? You’re worried about whether your meds are cold enough, or how you’ll make up mistreatments. But here’s the thing, travel is worth it. It’s proof this disease doesn’t get to take everything away from us.

It might mean carrying extra gear and thinking a couple steps ahead, but honestly, I would rather deal with the logistics than give up the experience of traveling. Whether it’s visiting family, attending a board meeting, taking time off just to explore, travel reminds me I’m still living, that I’m thriving.

So here’s the bottom line. Travel with a chronic or rare disease where you have medications or other requirements takes a little extra planning, but it’s generally possible. So invest in the tools that work, like a reliable insulin transport container. Plan ahead with your airlines and hotels and TSA and accept that some treatments like you know, light treatment, narrow band, UVB may pause, just have a plan for restarting. But most importantly, don’t let the fear of what if keep you at home.

For me, travel is worth every bit of effort. It is a reminder that life is still happening, and I get to be a part of it.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.