Traveling with a Chronic Disorder with Dr. Linda Bluestein, Kristin Koskinen RDN, and Jennifer Milner NCPT

[01:04] Kristin Koskinen, RDN: Preparing for a trip is never easy, but if you have chronic health issues like Ehlers-Danlos syndrome, mast cell activation disorder, or dysautonomia, your health issues may need their own suitcase, both emotionally and physically. How can we prepare with prudence and forethought yet travel fearlessly? Welcome back to the Bendy Bodies Podcast, bringing you state-of-the-art information to optimize your health. This is co-host Jennifer Milner, a former professional ballet and Broadway dancer who struggled for years with hypermobility-related problems. Now I train dancers to ensure the next generation of hypermobile artists are better equipped to work to their fullest potential.

[01:45] Dr. Linda Bluestein: I am Dr. Linda Bluestein, the Hypermobility MD. I started Bendy Bodies to provide accessible information about joint hypermobility. Combining my medical education and personal experiences enables me to treat and coach patients and clients to optimize their quality of life. This information is for educational purposes only and is not a substitute for medical advice.

[02:06] Jennifer Milner, NCPT: Today we've got Bendy Bodies team member Kristin Koskinen, RDN, back with us. Kristin, hello!

[02:12] Kristin Koskinen, RDN: Hello!

[02:13] Jennifer Milner, NCPT: And can you tell everybody who doesn't know you, can you tell them about yourself?

[02:18] Kristin Koskinen, RDN: Sure. I'm a registered dietitian nutritionist. I grew up as a dancer, and now I work with dancers and hypermobile people — of whom I have hypermobile people in my family — to help navigate this somewhat convoluted world that can be fun and exciting and confusing, to find best results for performance and for life.

[02:41] Jennifer Milner, NCPT: Excellent. And we appreciate all of that excellence that you have to offer everybody. So Kristin is going to help us tackle the topic of traveling today. Traveling with a hypermobility disorder or chronic illness can have its own set of challenges. So we are here to give you some handy suggestions. Let's start with the time leading up to traveling. Do you guys have one or two tips as you prepare for the trip? Linda, what do you got for us?

[03:08] Dr. Linda Bluestein: A couple quick things. So I would think about time zone changes. Are you going to be going east or west a significant enough amount that you will be in a different time zone? And if possible, start thinking about possibly changing your sleep cycle a little bit so that when you get there, maybe it'll be a little bit easier for you. Also, you can start thinking about the timing of your medications beforehand. It's easier to do these things before you have the haste of the actual travel itself and/or the exhaustion and things like that. So I would plan the timing of the medications beforehand, and also start thinking about where you're going. Is it likely to be super dry, super humid? What is the weather likely going to be?

[03:57] Jennifer Milner, NCPT: That is really helpful, just sort of planning what's coming up in your life. Time zones is something that I don't always — I think about it like, oh no, I'm not going to be able to sleep. But other than that, I don't think about it. Preparing medications is also really great. Kristin, what do you have for us?

[04:12] Kristin Koskinen, RDN: I would just dovetail on what Linda said — planning is absolutely essential. We know people with Ehlers-Danlos come with a lot of different others, right? Whether it's MCAS, POTS, any sort of neurodivergence. And so the planning can be really important. One, that helps to remove anxiety. You really can have a degree of control. And we know anxiety can flare any of those conditions. So let's plan.
[04:40] The things that planning covers for medications can go for food too. So if you arrive and you know you have GI issues and now you're in a time zone that's 2 or 3 hours different than your own, how's that going to relate to you and to eating, particularly if eating is something that can be a challenge to you at home?
Number two, sometimes people do better or worse in different parts of the country. I have clients who live in Denver who may not do as well there because of altitude or temperature, but when they travel south to someplace closer to sea level, maybe warmer, all of a sudden their symptoms start to back off and resolve a bit. It actually gives them the opportunity to eat in a way that's more liberalized than they do at home. And that's something we can look forward to, and for the clients I work with, we use it as a planned strategy to see what they tolerate when those environmental stressors are off their plate.
I would also include looking at places when you're traveling that may be more damp or humid. If mold is an issue, simply be aware of that. You may not have much control over it, but if your symptoms start to flare, being able to keep in mind why can be helpful.
[06:02] So definitely plan, and before you leave home, consider how you're traveling. Is it by plane, train, automobile, boat? If you're traveling by plane, you're going to have a different set of circumstances simply getting from here to there than if you're going by car. Make sure that you have room in your carry-on luggage and personal bag for the essentials. Your purse, your crossbody bag, whatever it is — you really have to have that planned out, because you might have lots of things that go in there.
Number two, look at getting a card from TSA or through your physician so that you have some pre-screening options. If you need to take specific foods to take your meds, to keep your POTS under control, or because you have MCAS and you can't eat what's on the plane — check and see. The rules change.

[07:15] Dr. Linda Bluestein: Right.

[07:15] Kristin Koskinen, RDN: We just know rules change as we go. So check with TSA in advance to get a medical exemption card. From what I understand, the TSA agent ultimately determines what goes and what doesn't. There's been some recent information about peanut butter not going through because it's a gel. So know what you can get through easily, know what may be a problem, have everything marked very clearly. Don't have mystery white powders going through TSA. If you can, keep things in original containers so they're not guessing. Make it easy on the people you need to help you so that things go as smoothly as possible.
[07:58] So plan, then have a Plan B, and maybe even a Plan C. Because if you have all that in place, you're going to minimize the anxiety when you get there. Start planning two or three weeks out if you can, because it may be a lot and you may not have the energy or the spoons to do it all at once. Have other people help you with that planning too. If someone else can contact your physician, TSA, or your airline — see what your airline will allow. A lot of times they will tell you, as you're boarding a plane, what FDA regulations apply, whether you qualify for a different exemption. Check with the airline, make sure you have all those things in place.
[08:42] Print out anything you've received from someone in authority, because not everyone will know the information you have, and they have rules and guidelines they're expected to follow. So if you deviate from those rules or guidelines, just make it as easy as you can on everybody so that those accommodations go through.

[08:59] Jennifer Milner, NCPT: Those are really great suggestions, and I love thinking about how you can help the people you're going to be encountering further down the road so that things go as smoothly as possible. Dr. Bluestein talking about time zone changes and Kristin talking about altitude changes — these are all things that a lot of people take for granted, but we aren't necessarily able to. So we do need to think these through. Great. Thank you.
[09:30] I would say from my point of view, it's really important to plan what you're going to be doing movement-wise before you go. If you're going to hike the Grand Canyon, don't start the week before you go. If you have these goals and things you want to accomplish, look at the altitude and look at what that's going to mean. I have hiked the Grand Canyon — not the whole thing — but I have seen what those altitude changes do to healthy people, and I knew my limitations.
[10:03] So from a physical point of view, if you want to take a walking trip of Europe, you want to start planning several months ahead of time, start building up that stamina, and find people to help hold you accountable, people to encourage you. Whoever you're going to be going on the trip with, check in with them and talk to them about it. If you have a personal trainer or a Pilates trainer or yoga trainer that you work with, even if it's in a group class setting, speak with them and get tips from them about what to do while you're on your own. They know your body by then. They can give you some great release moves that you might need when you're tight. They can say, hey, if you're going to be going into this different altitude, let's train your cardio a little bit differently.
[10:44] Talk to your doctor if you have dysautonomia like POTS and say, are there signs and symptoms I should be aware of, things that are going to tell me I'm pushing my limit? You probably already know what those are, but in a different situation, it may not present the same way.
[11:00] So from a preparation standpoint, for me it's all about starting to build up that strength and endurance, planning a long time ahead of time, being physically prepared so you can keep moving on your trip without overdoing it. So while we're talking about all of this — we're packing, we haven't gone on the trip yet — what is one thing that you cannot live without while you are traveling? Linda, let's start with you.

[11:32] Dr. Linda Bluestein: Well, I'm sitting on a cushion right now, and I always travel with one. I usually have it in the car, so I just take it out — I don't have to pack it per se. But I always start with my medications and supplements, because that takes quite a bit of time to get organized. I have all of my regular daily medication, and then I have my as-needed medication. And then I have extra baggies with extra antihistamines and extra things for immune support, and things for if I have a pain flare — extras that I rarely ever use, thank goodness, but I want to be prepared just in case. I always carry these in my carry-on. It drives my husband a little crazy, but I don't want to be separated from my medications if I can possibly avoid it.
[12:22] I also always bring at least two to five extra days of medication depending on how far I'm going and how long I'll be gone, because you just never know if something comes up and you have to stay longer. Medication is supposed to be in its original packaging, and I'm glad Kristin brought that up. It's not always practical, so if you put things in baggies and containers to make it more condensed, it's a very reasonable thing to take pictures of every bottle of your medication and also bring a record from your pharmacy of all your prescriptions.
The last couple of things: I always keep a little baggie with the absolute most essential things actually on my person — in a zipped pocket. And then you can carry a small flexible flask so you have a little bit of water in your jacket pocket without having to worry about a backpack or a bag.

[13:22] Jennifer Milner, NCPT: Wow. That's a great tip, to think about having just that little bit on your person. I hadn't even thought of that, but now I'm mildly obsessed with it. And — you know what, before I move on — I will say I have traveled a bit with Dr. Bluestein, and it is true, she does have that little cushion with the little handle. And it's so smart, because you don't know what you're going to be sitting on. You might be sitting on the floor of the airport for 12 hours. So I have great respect for that. That's a really great choice for your essential. Kristin, what about you? What can you not live without while traveling?

[13:56] Kristin Koskinen, RDN: I would say probably a water bottle, because you can get it through TSA. And we're speaking now just about air travel because that's the most restricted. Some sort of fluid container, because you can do a lot with it. If it's big enough — and you can take something very small, even something like what Linda said about a small flask. But really, what we're packing for is the contingencies. That's what we're really looking at. If everything goes the way we want it to, we don't need to do any of this. But when we're packing, we're packing for contingency.
[14:41] So I would say some sort of fluid container, and then with that — supplements and snacks. Linda's covered medications, but I'm going to say: what essential supplements do you have, or what do you know is absolutely effective and medicinal for you? As well as snacks — things that you tolerate, things that make you feel good. Whether it's electrolyte powders and things like that, you can stick those in a pocket or a purse. Don't let yourself get to an airport and realize they don't have anything you need. Having some snacks on hand can make the trip pleasant as well.

[15:34] Jennifer Milner, NCPT: Yeah, absolutely. I always make my family travel with empty water bottles through TSA, and then we fill them up at the water bottle stations. I am so paranoid about being caught without water, without some hydration of any sort. I get so thirsty and dehydrated. I do carry my little packs of Liquid IV — I have them everywhere. My family and friends laugh at me because my backpack is filled with enough sustenance for the entire A train should it break down underground in New York City for seven hours. I'm always like, we have to have snacks, we have to have this.
[16:10] But having that nut mix — something salty and protein-y and fatty and sweet — having that, having protein bars or whatever it is, I love to travel with those and I don't stress about going to the airport and worrying there's nothing there I can eat. That's a really great thing to think about, and not to feel bad about. When we go on family vacations, half of one suitcase is filled with snacks. We pre-buy the protein bars and the applesauce squeezers and all of that and fly with it so that when we fly home, there's room for souvenirs.

[16:46] Kristin Koskinen, RDN: Which makes a lot of sense. And I think you really nailed it, Jen, when you said you're not stressed. That psychoemotional stress can flare things. So yeah, totally take what you need, plan for contingency. Absolutely. I want to travel with Jen in her vending situation.

[17:04] Jennifer Milner, NCPT: Exactly. Yes, I have all the snacks, all the foods. The other thing that I cannot live without when I travel is a couple of release balls. I travel with my lacrosse ball, and I travel with a smaller, squishy ball — an Eric Franklin ball, or a Yamuna ball, or a yoga rollout ball. Something softer as well. And I will always have at least those two things to release my feet, release my calves, release my glutes, anything that starts to get tight when my sciatic nerve starts to feel pinched. I always travel with a couple of those, even if I'm just putting them in a carry-on for an overnight trip. If I'm on a long flight, I'll stick one of those release balls underneath my leg and let it start digging into my hamstring to try to keep everything from tightening up.
[17:53] So: cannot live without my snacks, my water bottle, and a release ball or two.
[18:01] So we're going to turn to travel itself. What are some ways to combat the effects of traveling — the swelling, the joints, the headaches, and so on? Kristin, I'm going to start with you this time.

[18:13] Kristin Koskinen, RDN: A lot of people, whether they're hypermobile or not, suffer with the effects of traveling. GI issues can be a big one — getting constipated is huge. As much as you can acclimate beforehand, going back to that planning, if you can acclimate before you get to a different time zone, that will be helpful. Making sure you're drinking as much water as possible and keeping those electrolytes in can be very helpful for all of the above. Plan for some discomfort, right?

[18:41] Dr. Linda Bluestein: That's going to happen.

[18:41] Kristin Koskinen, RDN: That happens across the board. And then be ready and dial into your situation. Constipation is one I hear about so often. Are there things, or do you have foods that are safe for you with regard to fiber, to make sure you're keeping the fiber up? When you're traveling, you don't have access to the fresh foods or foods that you normally eat at home. It may be a little bit more challenging, but if you keep it in mind, you can do that.
[19:04] Even when you get to your destination, what are some easy-to-grab things that you could have, or things you could pack to keep things going? These won't work for everyone — foods are very particular. But things that are easy and that you could actually travel through TSA with would include kiwi, dried fruits like raisins and prunes, and electrolytes. Because people who get behind on their electrolytes will also tend to have slower motility. So those would be three things I'd look at.

[19:44] Jennifer Milner, NCPT: I love that. Linda, what about you? What can we do to combat the whole travel situation?

[19:53] Dr. Linda Bluestein: I agree that air travel is the more complicated mode, because you have to go through TSA and all those extra things compared to car travel. So I'm going to make a few comments specific to air travel.
[20:05] My son tried for the longest time to get me to buy a spinner suitcase. I resisted and resisted. And oh my gosh, once I finally got one, I thought, why did I torture my shoulders for all those years with a regular pull? For me, the spinner suitcase is huge. We already talked about hydration, but especially when you're up in the air, you're getting dehydrated so much more than at sea level. Extra water and electrolytes are hugely important. Even if everything's gone smoothly, make sure you're staying hydrated mid-flight.
[20:58] Whenever possible, taking a nonstop flight is helpful, because then you don't have to worry about connecting flights and racing from one gate to another because your first flight was delayed. I have TSA PreCheck and I think it is absolutely essential. You don't have to take off your shoes. Every once in a while I'm in a situation where they say PreCheck isn't available here and I have to take off my shoes — and that matters because I normally have some kind of padding in my shoes. So definitely, TSA PreCheck is helpful. You can leave on a lightweight jacket, you don't have to take out your computer. It's just a lot easier.
[21:39] I would also say don't be afraid to pre-board. I know a lot of people feel awkward about accommodations, whether it be reserving a wheelchair ahead of time or the pre-boarding option. And definitely, as Kristin mentioned, bring extra copies of a note from your doctor. They don't have the right to demand a lot of information. So don't be afraid to just say it's medically necessary. If they start asking you a lot of questions, you can show them the letter and say, you can contact my doctor. I'm thinking particularly of a situation like standing in line at TSA when you can't stand for very long. You know, it is a good idea to sway, do calf raises, squeeze your glutes, those kinds of things to try to keep the blood flowing. But sometimes there's not a lot of space.
[22:32] I also would research the airlines. They're very different in terms of how much padding they have on the seats. There are certain airlines that I will not fly no matter what because their seats are so incredibly uncomfortable. I don't know if it's the padding or the incline or the amount of space, but I usually go with the more major airlines because I've found a couple that were just so uncomfortable. So I am picky about that and try to research it as much as I can. I try to move around as much as I can during the flight — get up and move whenever possible.
[23:12] Last two things: packing lots of layers can be very helpful so you can be peeling things on and off as you change temperature, even if the temperature around you isn't changing. And then lastly, having a flare plan written out ahead of time so that if you're on the plane and something happens and you're starting to feel more pain, you can look and go, oh, that's right. Because when you're in a flare, you don't really think about these things. You have to have the flare plan ahead of time.

[23:43] Jennifer Milner, NCPT: What about compression socks? If it's not something that you normally use, is it worth investing in and trying them out when you're flying?

[23:50] Dr. Linda Bluestein: Definitely. I had those under my devices section, but I'm glad you brought that up, because that is especially important for air travel. I am a big fan of compression socks. Whether you're traveling or not, I think they're a very helpful thing for people somewhere on the dysautonomia spectrum. You can get all the way from prescription-grade compression stockings that go up to your waist at 30 to 40 millimeters of mercury — and it feels like you're squeezing toothpaste back into the tube, they're very hard to get on — but they're very effective. They really help increase venous return and improve cerebral blood flow. Very few people can get those on, though. I can't get them on because of my hands. Lighter compression is still beneficial, but the more surface area you can cover, the more effective, and the higher the compression, the more effective.

[24:49] Jennifer Milner, NCPT: Great. Awesome. And we will hopefully hear a little bit more about that coming up. That's something I had wondered about too. I know for me, when traveling, moving around is really key. When I'm on the airplane, some people like to take their shoes off, some people don't because their feet swell and it's hard to put the shoes back on. There has to be some thought into that. I wear comfortable shoes and then take my shoes off and put on big fuzzy socks, then switch back when I land. But I like to periodically do the alphabet with my feet — just write out the letters of the alphabet to keep them moving through a full range of motion and keep that blood flowing. It definitely helps me.
[25:36] And when I stand up to use the restroom — not if, but when — I try to do some fascial gliding, even if it's just my neck, or through my arms, or through my lower back and hamstrings. I try to do whatever I can without invading other people's space, because everything does start to tighten up.
Part of combating the effects of travel for me is my hydration levels leading up to it. You don't want to be getting up every half an hour on the plane, but I try to make sure I've hydrated as much as possible so that when I land, I'm as little dehydrated as possible — put some in the bank, as it were — and then start drinking again as soon as I land. And then as soon as I get wherever I'm going, I like to take my shoes off and do really easy foot doming exercises with bare feet on the floor. If I can, I like to lie on my back with my feet up the wall, give myself a little rest, do some vagal breathing, and recenter my body from having been many miles up in the air and all the way back down again.
[26:56] So we've landed, we've gotten where we are, we're hopefully in pretty good shape. Kristin, do you have maybe three top tips for finding food that you can actually eat while you're on vacation?

[27:06] Kristin Koskinen, RDN: Yes. Number one — plan and scout in advance. Find out where you're staying, what's nearby. You can look at menus online. You can call restaurants in advance and ask about accommodations, and usually you can get a pretty good feel for whether they're accustomed to making modifications. Certain cities will be better at that than others. If you're on one of the coasts, the West or East Coast, chances are that's going to be easier to find than in other places, as those areas tend to have a lot of establishments accustomed to making modifications.
[27:45] Then have a Plan B if those places fall through for any reason, because things happen. The chef got sick, the restaurant is closed on a Monday and you didn't anticipate that. Have a Plan B. Then have a Plan C where you've got your snacks, and look for grocery stores or familiar retailers. You can find major retailers across the country — even if it's not your primary retailer, find a big box store you could go to if you're in a real pinch. You'll find a Walmart or a Target in a lot of places. Find local grocery stores, see what's available in advance, and avoid the frustration.
[28:29] If you're staying in a hotel, call ahead and find out if they have a mini fridge — that's not standard for every room. If you need a microwave, check on that too. If you're staying with friends or family, that would be an easier accommodation, because they can help you with those things in advance.
Really, it's that pre-search and planning. Things can or will go wrong on at least two levels. If they don't, awesome. But if they do, you're not stressed out, you're not frustrated, and people generally know and understand.

[29:21] Dr. Linda Bluestein: And we're —

[29:21] Kristin Koskinen, RDN: And we're getting there, which is why we have conversations like this. The third thing is, if you're traveling with other people and something just feels like too many spoons for you to go out, or to sit, or to wait that long for food, I think it's important to have a reasonable expectation established. If you're staying back on a particular evening because you have a big day the next day and it's more important for you to show up for the Grand Canyon hike, that's okay. That's just how you're going to navigate the trip, and you're ready.

[29:57] Jennifer Milner, NCPT: And that's such great advice — give yourself some grace and not feel like you have to go to every restaurant and experience everything. We do associate food as a big part of our vacation, giving ourselves permission to eat things we wouldn't normally eat, experience amazing new restaurants, have the bonding time with friends and family over a meal. There's a very social aspect to it as well. So having emotional permission to not do that every night, to just eat whatever it is you picked up at Walmart that day and know that it's going to be okay, and then have that special meal with family and friends the next day — that's really great. Can I just push a little bit further and ask about going way outside your comfort zone, like traveling abroad, where there's no Walmart?

[30:47] Kristin Koskinen, RDN: Traveling abroad is interesting and it can be beneficial. It's going to be harder getting there from the U.S. to wherever abroad is — unless abroad is Mexico or Canada and you live near the border. But a lot of times the food quality and preparation in other locations can be different enough that people tolerate it. For example, gluten. If you go to Europe, a lot of people who do not tolerate gluten — and I'm not speaking about celiac disease, but people who just don't feel good on gluten in the U.S. — go to Italy. They can eat the pasta, they can eat the cheese, they can do all these things, and their bodies feel good. It's not just that they can get away with it, but they actually feel good. And it speaks to food production in the U.S., where we produce for mass rather than meals being really special.
[32:25] When you go to those places, you'll find things that are similar — foods that you recognize, even if they're not packaged the same way. I would suggest, in those situations, learn enough of the language that you can communicate your food needs. It sounds like a big add-on, but if your needs are to that degree, it's worth it. You can also call ahead depending on what you're going abroad for and find a point of contact at the hotel and ask, is there a market nearby?

[32:34] Jennifer Milner, NCPT: So don't travel with the spirit of fear when going abroad. It's okay. You may go to that market in Marrakech and see these amazing stalls of produce and think, wow, this is great. So that's awesome.

[32:49] Kristin Koskinen, RDN: And if you do have limitations at home — for example, if histamine foods tend not to be your friend — then talk to someone, get a list of things that may or may not be okay for you, and stick with things that feel more familiar.

[33:10] Jennifer Milner, NCPT: And that's okay too.

[33:10] Kristin Koskinen, RDN: And that's okay. And you can enjoy all the other things.

[33:11] Jennifer Milner, NCPT: Exactly. So Dr. Bluestein, I'm going to turn to you and say, what advice do you have for traveling without your pit crew — without that group of support that you've come to rely on? Your massage therapist, your doctor you can call at a moment's notice, that sort of thing?

[33:31] Dr. Linda Bluestein: So I think this is an important time to bring up that a lot of people are traveling for doctor's appointments. I have people that fly to come see me, and they have to stay in a hotel. They're sick enough that they're coming to see me, so they have a lot of additional challenges. Definitely, whether you're traveling for a doctor's appointment or something much more fun like a hike, it is a good idea to bring your one sheet of medical problems.
[34:06] When I tell people about the one sheet, they say, oh, I couldn't possibly fit everything on one sheet. And that's the point. The one sheet contains the most critical pieces of information that somebody needs if they were to take care of you. For example, you might have a section with your medications — and you can group them if the list is really long. You can just say "antihistamines," for example, if it's really hard to fit everything. If you're on TPN and you've had tons of surgeries, you can condense that and say "3 cervical spine fusions." When the person wants more information, they'll ask. But right there in that one line, you've given a lot of information.
[35:06] So the idea for the one sheet is: if you only have one sheet, what are the critical things you're going to put on it? You're going to put your allergies, your medications — and those could be in different boxes or areas. You're going to put your most significant medical problems. My basal cell cancers are going out. They're not on the one sheet. My knee scope — not on the one sheet. It's the most crucial things that you want your healthcare team to know about.
Another thing: when Kristin was talking about perishable foods and going to the grocery store, I was reminded that when I was traveling for work toward the end of my anesthesia career, I would often have so much pain at the end of the day that I would lie on an ice pack. My hotel rooms had refrigerators but not freezers, and they would routinely keep ice packs in their freezer for me. Now I was going back to the same hotel multiple times, so I don't know if other hotels would do that. But if you're traveling and you normally use ice as a tool for pain flares, you could call ahead and ask, if I bring one of my soft ice packs, would you be able to put that in your freezer? Alternatively, I would bring one of those old-fashioned ice bags with the screw top — just a collapsible bag you can fill with a few ice cubes. It doesn't get as cold as the other ice packs, but you can pretty much always get ice anywhere. I actually did it multiple times on a plane because I was having so much pain — I would have them fill the ice bag for me.
[37:06] So if you don't have your pit crew, it is really, really important to have your list of medications and your one sheet. You can have the one sheet, and then you can have a three-page version of the one sheet for when more detail is needed. But always have the one sheet. Always be ready to offer more information, but start with the really super succinct version.

[37:32] Jennifer Milner, NCPT: That's great. And thank you for breaking down how to make that medical one sheet, because it can be really overwhelming trying to figure out what to put on that one piece of paper. I will say from personal experience, having traveled a lot as a dancer, one of our favorite hacks to make an ice pack is to take a quart Ziploc, put some water in it — not a full bag of water, just some — and then add a tiny bit of vodka or rubbing alcohol. When you freeze it, it won't freeze into a hard block; it'll be a little softer and slushier. Then put another Ziploc — a gallon size — over that. Those make really good portable ice packs as well.

[38:15] Dr. Linda Bluestein: That's perfect. And I do help people oftentimes make their one sheet in one-on-one appointments. We'll go through and figure it out, because I have the full spectrum of clients — from "I'm still dancing professionally and just want some help with a few tweaks" to "I'm pretty much spending all day in bed" with an exhaustive list of issues. And maybe they're not in an area where I can take care of them as a patient, but I can help them organize their information so that they can get better care from their local providers.

[38:51] Jennifer Milner, NCPT: Yeah, that's really great. And it's nice to have someone else help you do that — to say, I can help you with this. That's one of the things I do with my clients as well, in helping them prepare. If I'm helping my clients get ready for a trip and they're trying to figure out how to stay moving without their usual classes and trainers and their pit crew, that's one of the biggest things we'll work on.
First, I'll ask: if you're comfortable in a group class, what props do you need to bring? I always encourage my clients to have a yoga block to help prop them if needed, to give them a little bit of proprioception. And my favorite travel item is one of those small, soft, eight- or nine-inch exercise balls — like a Pilates ball — because you can completely deflate it, you can inflate it really easily. Blow it up just a little, put it under your sacrum to give your sacrum a really nice rest. You can also take it to group classes and use it for a little bit of propping or proprioception.
[40:01] If it's someone I work with regularly, we'll put together a travel exercise routine that's 20 or 30 minutes. They'll just grab a couple of small round TheraBands and throw those in their bag, along with that small squishy ball. It takes virtually no room, but they'll have 20 to 30 minutes of exercises to work out the kinks and tweaks they need — whether that's getting their glutes firing because of an unstable SI joint, or whatever it is. So I encourage you to talk to someone and try to get that routine together. Or if you don't work regularly with someone, put the routine together for yourself before you go, so when you're there, you're not wondering, what should I be doing? Have your exercises prepared ahead of time.
[40:47] I'm not a yoga trainer at all, but I have a really nice yoga sequence that I like to go through on vacation because it feels good. It makes me all stretchy and loose and ready for hiking or whatever we're going to be doing that day.
[41:03] If you're going to try out new classes — say the all-inclusive resort or the hotel offers them downstairs and you want to do it — just know yourself. Know whether you have the ability to modify as needed, or whether you're a people pleaser who's going to do whatever they tell you. Make sure you understand what is about to happen. And then give yourself permission to rest. Allow yourself to have rest days. Don't feel like, I'm in Italy and I'm wasting it in my hotel room. It's okay. Lie in your magnesium bath salts and enjoy the day and eat some gelato when you get out. You don't have to be pounding the pavement every single time you're out there.
[41:55] And don't be afraid to reach back out to your pit crew. I have people reach out to me while they're traveling all the time and say, oh, this is hurting. And we'll do a quick ten-minute check-in: here's where you put your lacrosse ball to help release that. And then they're on their way again. So don't worry about reaching out to people.

[42:09] Dr. Linda Bluestein: I think I need to book a session before my next trip to get that full 20 to 30-minute program. That's amazing.

[42:18] Jennifer Milner, NCPT: Your little metaphorical one sheet of exercises. Yes.

[42:21] Dr. Linda Bluestein: So helpful.

[42:21] Jennifer Milner, NCPT: And I think that's one of the themes that's come up today from all three of us: plan ahead. Kristin talks about planning ahead with your food and eating and researching, and having a Plan A, Plan B, and Plan C. That's what we're all saying. Plan ahead. It takes away the anxiety, which as Kristin said, can cause flares. It removes as many moving pieces as possible, and it makes us feel prepared and ready so that we can go out and be spontaneous. Let's plan for our spontaneity. Planning will take away some of that travel stress and the wear and tear on your body.
[43:01] All right. Last words of wisdom — one or two of your best travel tips. Go, Dr. Bluestein.

[43:02] Dr. Linda Bluestein: Okay. For me, I'm always thinking cost-benefit analysis. What does a given prop weigh? How big is it? The ice bag, braces, KT tape — I have a collapsible reacher that I use at home to pick things up off the floor, a portable version. I have different ergonomic tools. With every single item I'm considering bringing, I'm thinking: what does it weigh? How big is it? I'm so glad you pointed out that that eight- to nine-inch ball can collapse and then reinflate, because that's brilliant. How big is it? What's the potential for need? And that's always based on what's been happening with me lately, because my needs have changed dramatically over time. And then: what's the risk if I don't have it?
[43:56] I actually did forget my cushion on one trip once, and I was in a panic. I was anxious, but I was trying to mitigate that anxiety because I knew it would just make things worse. So, what are the risks if you don't have the thing? Factor all of that into consideration when you're deciding what to bring, because I could fill an entire suitcase with all of the different paraphernalia I have, but hopefully I won't need most of it.
[44:34] The last part of that I would add is: what's the chance that you could buy it if you had to? If it's something custom-fitted for you, it's not that big, you might need it, and you can't replace it — maybe throw it in your bag. But if it's something over-the-counter that you could just buy at Walgreens — I'm thinking of my wrist supports — maybe leave that at home, because if you really get in a pinch, you could go buy another one.
[44:59] So those are the kinds of things I think of when it comes to devices in particular. For me, I plan first — medications and devices and those things — and then figure out how much room is left for clothes. And it's usually not very much. So if you see me wearing the same things, at least the same pants, every day, there's a reason. At this point in my life, it's all about comfort. I've tried to look nice and be clean, but other than that, you have to be practical.

[45:36] Jennifer Milner, NCPT: And I think the cost-benefit analysis is brilliant, and a great tool to use as you're looking at your empty suitcase and trying to figure out what to fill it with. And honestly, the Parthenon or the Grand Canyon or the nation's capital — whatever it is — won't care if you're wearing the same shorts you wore the day before. So I think that's great. Kristin, what about you?

[46:03] Kristin Koskinen, RDN: My recommendations really mirror Linda's. Number one, plan. Then plan again for contingencies, and prepare to the best of your abilities. Recognize that part of the adventure may be misadventure. Do you have ways to undo any misadventures as part of your planning? Whether that's antihistamines or specific supplements you use or anything along those lines.
On the packing — I'd say exactly what Linda was saying: start with the things that are essential for your comfort and for taking care of your body and yourself. Then the clothes can follow. Really make sure you have comfortable shoes. Unless you're traveling for a wedding where the apparel is very important — in that case, ship the wedding clothes ahead of time. Heels take up a lot of space. If you're in a position where you can ship things ahead of time, do it so you have the things you need on your person or in your carry-on. Just manage the traveling first. Take care of that, and then we'll take care of the rest when we get there.
[47:25] It doesn't matter. It's being there, it's being in the experience. Your travel mates really don't care if you wear the same black things, or find things that can be hand washed, or find out if there's a laundry service where you're staying. We just don't need to pack that many clothes and shoes — have a spare.

[47:45] Jennifer Milner, NCPT: That's what you need.

[47:46] Kristin Koskinen, RDN: Buy stuff when you get there, dress like a local, and really make room for the food and the things that you need for your health and well-being. Worry about the rest later.

[47:59] Jennifer Milner, NCPT: That's fantastic.

[48:00] Kristin Koskinen, RDN: Yeah, wear layers on the plane and you've taken care of about 90% of it.

[48:03] Jennifer Milner, NCPT: That's right. You can wear 90% of your travel wardrobe on the plane, and then just push it under the seat or sit on top of it if you get hot.
[48:13] And I would say my top tips: I love the cost-benefit analysis, and I like to apply it while I'm traveling too. Is the cost of hiking the Grand Canyon worth it? To the best of my ability — absolutely. Is the cost of standing around at something I don't really care about, or walking through a mall I don't care about, worth it?

[48:36] Dr. Linda Bluestein: No.

[48:36] Jennifer Milner, NCPT: So weighing those things out and deciding which ones I want to do and which I do not. And going along with that, managing what I do and when I do it is also about managing expectations. Hopefully you're not traveling with anyone you cannot be honest with about what you can and cannot do. Have that conversation. Girlfriends' weekend at the winery — I am all in. Probably not going to match everyone drink for drink, but I want to be there and hear the funny jokes and be part of it. I may go to bed early, I may sleep later. Being able to manage expectations.
[49:15] Going to a cousin's wedding and saying, I want to be here for your big day — I might not make the bridal shower and the girls' night out and the rehearsal dinner. You know, I may have to cut some of those things short. Manage expectations ahead of time so that you don't feel like you're letting people down in the midst of it.
[49:32] And then from a purely practical point of view: plan your shoes wisely. It is not the time to be reaching for cute footwear and flat flip-flops and sandals. Get those really great sneakers and have arch supports in them. They will change your life if you are walking around Rome or the Black Hills of North Dakota or wherever it is. You want something comfortable and supportive. That's where I draw the line. My teenage daughters love their flat Chucks and Keds, so I just buy drugstore arch supports for each pair of shoes, because they will not take them out and swap them. So we have arch supports in each pair of shoes they're going to wear. And I strongly encourage you to find shoes that make you feel good and feel supported and strong and as comfortable as possible. You will enjoy the trip exponentially, I promise.
[50:34] All right, I think that's all from us. If you guys have other questions, we would love to hear them — a lot of people have talked about how difficult it is to travel with these conditions. If you have additional questions about travel, throw them in the comments or reach out to us on social media. And speaking of social media, where can people find us? Kristin, where can they find you?

[50:53] Kristin Koskinen, RDN: They can find me on Instagram at @drkoskinen_rdn — that's K-R-I-S-T-I-N — and I'm guessing that'll be in the show notes, or at my website, www.eatwellpros.com.

[50:54] Jennifer Milner, NCPT: Excellent. And Dr. Bluestein, what about you?

[51:12] Dr. Linda Bluestein: Either at my website, www.hypermobilitymd.com, or I'm on a lot of different platforms — Instagram, Facebook, Twitter, LinkedIn, Pinterest. I think those are the main ones, @hypermobilitymd.

[51:26] Jennifer Milner, NCPT: Excellent. And of course, you can find all of us on social media at @bendy_bodies or www.bendybodies.org. And you can find me on Instagram at @Jennifer.Milner or my website, Jennifer-Milner.com. So thank you so much, Team Bendy Bodies — Dr. Linda Bluestein and Kristin Koskinen — for hanging out today. I am Jennifer Milner, and from all of us at Bendy Bodies, thank y'all so much for listening.

[51:58] Dr. Linda Bluestein: If you found this helpful, follow the Bendy Bodies Podcast to avoid missing future episodes. Please leave a review and share the podcast so more people know about Bendy Bodies and joint hypermobility. Screenshot this episode and tag us in your story so we can connect. Our website is www.bendybodies.org and follow us on Instagram @bendy_bodies. We love seeing your posts and stories, so please tag us using #bendybuddy. This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for any medical concerns. We'll catch you next time on the Bendy Bodies Podcast.