It’s getting to be my travel season again, and while I haven’t solved most of my problems, I’m at least getting better at working around them.
My first travel post was in 2013 and was my first major trip since developing an intense sensitivity to corn, multiple food allergies, and becoming airborne sensitive:
Since then I have traveled to:
- Austin, Texas for the Housecore Horror Film Festival (yes, as in movies! But they didn’t serve popcorn so I could actually go!)
- Oakland and San Francisco, CA (twice!)
- Baltimore 3 more times for Maryland Deathfest
- NYC twice, for Martyrdoom, and also to hug friends.
- Bend, Oregon for a specialist doctor. (This got me my EDS diagnosis)
- Minneapolis, Minnesota, for another specialist doctor. (This got my my MCAS diagnosis.)
After a few trips like this, I am somewhat of an old hand at traveling. It doesn’t really get less awkward, but I just am more resigned to it. I refuse to quit living my life and doing things I enjoy just because my body is a jerk, so I am going to keep going through this effort and expense.
The topics covered in my previous post are still germane, and I still have a water problem that is not corn. I haven’t solved this water problem. I am still shipping my water ahead. Here’s a rundown of my travel “routine”:
Overview- The List
I end up making a lot of lists, starting at LEAST 3 weeks before the trip- even a quick 3-day weekend road trip. I want to be spontaneous but when it comes to my particular health needs, that is a really, really bad idea and could result in, you know, death. So I strike sort of a compromise. I plan the accommodations, meals, and and items to pack in obsessive detail. Then for actual plans I identify the *types* of events I will be going to just to the point of knowing what kinds of precautions to take/whether I will need to call ahead to see about whether popcorn will be served, and let the details of what we do when be spontaneous. It sort of works.
Here is my generic list of allergy-specific items that I bring on every trip. I customize based on my specific needs and activities.
- A small HEPA air filter with an optional ionizer setting
- Allergen pillow cover (I bring my own bedding because I’ll be allergic to detergent used on the provided bedding and just one wash won’t usually get it out.)
- Allergen mattress cover
- Bottom (fitted) sheet
- Fleece blanket
- Sleeping bag (packs down smaller than a blanket)
- My own cleaning products (baking soda and corn-free vinegar usually)
- Small (quart) and large (liter) water bottle
- The appropriate backpack, purse, or waist pouch to hold everything I need to have on me at a given point in time including an epipen. This is highly individual and the right product will depend on your needs.
- My own toilet paper.
- Handkerchiefs because I react to some disposable kleenex.
- Safe dish soap
- Safe for me toiletries, including sunscreen. If I forget something I can’t just buy it usually so I am VERY careful to remember everything.
- My own towels
- Safe dish sponge
- Epipens (4x)
- Ketotifen fumarate (compounded, 2mg 4x/day.) This has been a “magic” drug for me and even though it has side effects it really helps prevent my most severe reactions.
- Quercetin, (jarrow brand, over the counter. I used to take 500mg 2x every day normally, and do so for the entire trip. I no longer do because it is derived from legumes and those are a problem for my g6pdd.)
- Xyzal (levocetirizine, compounded, enough for 5mg 4x/day. I take this many, every day, for the entire trip.)
- Benadryl, (diphenhydramine, compounded. I used to take 25mg every 6 hours as a preventative if I am going somewhere with a lot of potential triggers, more as needed up to 50mg every 6 hours. I no longer do because benadryl is a possible trigger for my g6pdd, but I do have some on hand for emergencies as a little bit of low-level hemolysis may be worth preventing a severe reaction.)
- Atarax (hydroxyine hcl. I take 25mg every 6 hours as a preventative if I am going somewhere with a lot of potential triggers, more as needed up to 75mg every 6 hours. I take this instead of the benadryl but used to take it in addition to the benadryl if I had already taken max benadryl and needed more antihistamines.)
- Zantac (compounded I take 150mg 2x/day as a preventative, more as needed based on doc’s advice)
- Safe-for-me first aid products: gauze, non-stick pads, coban tape, polysporin, hydrogen peroxide, isopropyl alcohol
- Safe food: Meals frozen in single serving containers, safe snacks, and safe fruit. I mail ahead anything that won’t spoil and pack frozen food in a cooler in my suitcase.
- Safe water: Yeah, really. See the below for details.
- Vogmasks, for the plane and elsewhere.
- 3m Respirator, in case I get some contamination that the vogmask can’t handle.
I keep all medications either in the original pharmacy bottle or with a copy of the prescription taped to the container.
This is a special me-problem, not a corn problem. I still cannot seem to tolerate any water but the tap water from my Seattle area water district. SOME of my water problems are corn problems, but I can’t tolerate any of the bottled waters or water filters that other corn allergics can. I have some sort of other mineral sensitivity. The Water Post has more information about water & corn allergy/MCAS.
So I send my water ahead. I buy water tanks meant for camping and fill them. In the past I used to ship them via Fedex. I don’t do UPS because they seem to do more damage to boxes than Fedex. I heard that UPS facilities have conveyor belts that drop items > 2 feet several times at each sort facility, so that may be why. Lately I have been shipping them air cargo, although I think next time I’m actually going to check them in luggage to make sure they arrive with me. This will be a bit nervewracking as TSA won’t like it, but I have just had too many debacles with having shipping get delayed, cargo offices closed, etc. I plan to call TSA Cares two weeks before, and then day before, to arrange this. I plan to use a rolling cooler to hold the water tanks because when you check a cooler as luggage, it is handled separately from suitcases, at least on Alaska Airlines which is who I fly with the most. It is handled as “oversize” or “odd” baggage so it doesn’t go on the belts and get jostled around as much, and also has an obvious “this side up” so isn’t likely to get stored upside down or sideways. I then plan to pack them in there with the tops closed tightly but visible to be opened so that they can be checked for explosives (supposedly those tests don’t involve dipping anything IN the water, just waving it over the top) and a laminated copy of my doctors note, and also a short not explaining I’ve discussed with TSA Cares and it is a medical supply that needs to arrive with me.
For packaging, we have begun using packing paper or foam sheeting rather than bubble wrap, as the tank is too heavy and the bubbles just pop. I’ve been using 2.5 gallon HDPE water containers from Rigid and mailing several to myself if I need more than 2.5 gallons because the larger tanks are hard to handle.
When I get the tanks, I fill them with water and add some baking soda and let them soak for a couple days then rinse well before filling and shipping, to get any weird factory residue off. So far no issues from the plastic container, or at least small enough issues that the antihistamines I typically take for the whole trip mask it. It’s definitely better than drinking the water at the destination.
So far it seems to work for me to budget 1 gallon of water per day of stay for drinking and occasional washing of dishes. I don’t wash every dish using my safe water as I pack a lot of frozen food that I already pre-made and eat that right out the container. So really I’m usually just washing a fork or the occasional cup. I always add an extra gallon per 5-day stay “just in case”, as running out would be terrible.
Since this whole “checking the water as luggage” thing is still risky, I also plan to bring my Aquaversa carbon filter and make sure I have a faucet I can hook it up to at the destination. I am not convinced it will make water everywhere totally safe for me though, so this is a backup only. My known-safe water is preferred.
For the most part, food is merely fuel for me, especially on a trip. It has to be. So the idea is to package up something convenient to shove in my face to keep myself from passing out so that I can go go go to the next activity. This is a weird way for me to operate as I have typically been the type to want to eat my way through any tourist destination, but that’s just not possible anymore, so I find other things to enjoy. In addition to saving time, packing my own food pre-made cuts down on possible cross contamination opportunities in a shared kitchen situation and cuts out the need to wash my dishes in safe water.
If I were going somewhere for an extended stay, I might try to arrange for safe food at the destination, but since my trips are usually filled with activities, I actually just save myself the effort and pre-cook myself all the food I am going to eat on the trip. I used to pack my food in the dishes I would eat out of, but it got incredibly heavy because they were glass containers, so now I pack the food in foodsaver bags and bring one set of dishes/utensils to eat with only. I freeze the food solid before packing to make sure it doesn’t get too warm in transit, and also to extend how long it stays good while I’m traveling. Also since when my histamine bucket is full I react to high-histamine food, so I keep most food frozen until shortly before I’m ready to eat it.
I also make myself whatever shelf stable road food I can manage: snack mixes made from any safe fruits and nuts I have, and homemade beef or chicken jerky. I make big big batches of dried fruit in my dehydrator and store them in the freezer until I have other ingredients to make a trail mix. Then I mix up the trail mix and package it into single servings and keep in the freezer. Similar with jerky. I also pack or mail fresh fruit ahead such as safe apples, pears, and oranges.
The fruit, jerky, and snack mix I mail ahead and the frozen food I pack in my luggage. My usual amount of food is 3-4 pints of “meat and veggies” meal per day, plus two whole fruits, plus about 2 cups of snack mix for when I’m out. I am not a big person, but the volume of food I eat is a bit high compared to some because I don’t tolerate grains or any starchy vegetables. When you eat grain and starch free you have to eat a LOT more. I usually add an extra pint of food per couple days just in case I get extra hungry, as again, running out and going hungry would suck. I am expressing food volume in “pints” because I usually use either mason jars or 2-cup pyrex round containers.
Air Travel: Luggage and Liquids
My water problem makes air travel complicated.
TSA regulations state that you can bring liquids (or semi liquids such as creams, lotions,and “pureed” foods) only in 3oz or less sized containers, and only as much as will fit in a quart sized ziploc bag through security. Frozen-solid liquids are supposed to be allowed in any amount and not subject to the 3oz rule. You can check in luggage basically as much liquid as you want, but most food and liquid will be examined for safety by security. TSA is also in the process of making it standard practice to check all food brought through the checkpoint as well, although at the time of writing (check top of the page for last update) this practice is still being rolled out to airports so it won’t happen everywhere.
There is an exception to the liquids rule for medically necessary supplies, including medicines and breastmilk. To take advantage of this rule, get a doctor’s note stating the medical necessity, and then call TSA Cares to discuss your needs. Call them well ahead of your flight so that you know everything you need to know, then also call 3 days ahead and the day before to make sure nothing has changed.
I check the food and water I will need for the trip in luggage, but I also I bring my own food and water that I will need for the trip (with an extra amount in case of delays) through security. I pack a glass bottle of water along with my doctor’s note, but just in case TSA decides to not follow what they agreed up on (this unfortunately happens), I also bring extra water in 2oz glass “boston round” bottles and bring that in a quart bag as my “liquids” allotment. Once I get through security I dump the bottles into a regular water bottle. The amount of water I can fit into the quart sized ziplock will keep me reasonably hydrated for up to a 9 hour trip. Longer is pushing it. Packing a lot of fruit helps. On TOP of that, I also bring a frozen solid wide-mouth pint jar of water with me as “cool pack” in my food bag . Between all those things, I feel I should be covered no matter what happens. I really just don’t want to get stuck somewhere with no safe water.
Something else to consider is that airlines charge a LOT for overweight luggage, way more than they charge for a second bag. I bought an inexpensive luggage scale and check the luggage policies with my airline ahead, and weigh my luggage at home before I leave for the airport. Generally I do a “practice” pack including all of my meals about 3 days before I leave to make sure that everything will fit and be under the allowed weight per bag.
When possible, I find something with hard-surface floors and no animals. Either a friends’ house or an AirBnB. I contact the host ahead and confirm:
- No animals or animals confined to an area where I won’t be.
- No carpets.
- No wool rugs, blankets, or other furniture.
- Remove all air fresheners at least one week before I arrive.
- Use only unscented cleaning products
When I have to stay at a traditional hotel, I call ahead and tell them I have “multiple chemical sensitivities” (which is probably true but not my main reason for my request) and ask them to use “non toxic, unscented” cleaning products on the room. This works to varying degrees so I usually get pretty sick no matter what and spend the whole trip eating antihistamines like candy.
As soon as I get into the room I remove all bedding from the bed and put it in a closet somewhere. I put the allergen covers on the bed and pillows and set the HEPA filter going full blast with the ionizer on. I wipe down all surfaces with a corn-free vinegar solution, and then let the room alone for a couple hours to de-stink. Then when I return it is usually tolerable and I can turn the ionizer off. At night, my boyfriend sleeps in the bed with me and the fleece blanket is enough for him. I sleep cold so I also use the sleeping bag to keep myself warm enough.
When I stay at friends’ houses, I mail some safe laundry detergent ahead and ask them to wash all sheets, pillowcases, and towels before I arrive. That way I don’t have to pack my own sheets. I do still bring the allergen covers though.
- Ethanol from corn in traffic fumes
- Perfumes/body products/laundry products on others
- Cleaning products used in public establishments
- Fog used in stage shows
- Popcorn from street vendors or in theaters. Even vaudevillian/broadway theaters have popcorn sometime!
- Other cooked corn products on the street or inside establishments
The main way I deal with these hazards is by taking preventative antihistamines, and using a carbon filter mask. When traveling, I take compounded Xyzal every single day, compounded Ketotifen every single day, as well as 150mg (1 pill) compounded Zantac and 25-75mg (1-3 pills) of compounded Hydroxyzine up to every 6 hours as needed. The Hydroxyzine does make me a little sleepy but not too sleepy. The Zantac is just to help the Hydrozyxine and Xyzal work more effectively. Please talk with your doctor about dosage and interactions before you decide on your personal antihistamine regimen.
My airborne sensitivity changes depending on other allergen exposures and how many antihistamines I’ve taken. But to give you an idea of what my specific challenges are: I get dizziness, burning tongue, and hoarse throat from being within 5 feet of someone who uses Downy fabric softener on their clothes. Not all perfumes bother me but the ones that do give me the same symptoms from usually about 10 feet. Foodwise, sitting within 25 feet of hot corn starch or cooked/steaming whole corn kernels will give me numb lips, difficulty swallowing, and the pass-outs. Within 10 feet for cold, crumbly corn foods like Cheetos or Fritos. All of the above I can handle in close proximity with compounded Xyzal and a carbon filter mask. Popcorn the mask only saves me for 10 minutes.
I can handle fog machine fog for 2 hours with the mask on and a benadryl, if it’s the expensive glycerin-free stuff. I feel hung over for 2 days after. If it’s the glycerin based fog juice, the stuff that smells like cotton candy, the mask will only save me for 20 mins TOPS, probably not even.
I have several masks, but the one I use most often is the Vogmask N99 CV or N99 C2V with a carbon filter insert. I have several varieties including the black vegan leather (looks like you’re a Mortal Kombat character), a plaid one, and a couple blue-ish colored ones. I wear the black one the most, but because the stylish ones don’t look clinical, people seem to not realize that I’m wearing it for medical reasons and that can cause some interesting social issues. So there are reasons to wear something that looks medical instead of cute.
You can gently wash the Vogmasks with soap and water, but I personally recommend against running them through the washing machine as I think they’ll get thrashed and the filter part will be compromised. Some people need to allow these masks to off-gas for days or weeks before using. The filter portion of it is fine for me out of the box, however the cloth strip around the edge that holds the whole thing together makes my face itch, and sometimes the material of the outside of the mask “smells funny” to me. To deal with the itchy cloth, I get a faucet running and hold the edges under the stream and scrub at it with my fingers, then hang it on a doorknob to dry. Once it’s dry, I stick the whole thing in my back jeans pocket and walk around like that for a day, the warmth of my butt removes any chemical smell from the mask. This works with everything except those velvety ones that just smell weird to this day. Yes, I did just recommend using your butt to *remove* scent from an item. Any other way you have to get it warm but not too hot for several hours should work fine, I just find my back pocket convenient.
I also bring along a 3M respirator for the airplane and other heavy duty airborne situations that I can’t opt out of. You can read more about the respirator on my Product List.
My previous post on travel here: Corn Free Travel: To Baltimore and Back Again