I've been wrestling with this a lot lately, thinking about where I might feel safe as well as BE safe.  I know it could be dangerous, but traveling in this country can be, too.  The worst part for me is the anxiety until I get there and see that where we're staying is okay, but that happens in the U.S., too.  I would only recommend travel of any kind to people who are very stable and have symptoms well-controlled by medicine.

  I have a list of doctors in most countries who have studied medicine in an English-speaking country and who speak fluent English (through IAMAT), but that isn't in every city.  This is frustrating, because my bucket list is full of trips to remote places!  And, I'd love to go someplace warm in the winter!

  My doctor said he thinks developed countries will be okay, as long as I take a variety of meds with me (including antibiotics, prednisone, and epipens), am careful about diet, and not too far from a hospital or medical facility.  He even suggested I take a sterile  IV needle and tubing with me, just in case.  Chile has good medical care in the cities, as does Argentina, but I haven't checked anywhere else yet.  We could go stay near Lisa in Brazil, since she knows all the good doctors and hospitals!!  (Don't worry, Lisa, I'm just kidding!)

  The trouble is that we like to get away from big cities and get to know the people who live there.  Lately, I've been wondering if we should stay in a city and only take  day trips further away.

  I'm just dying to go to the Galapagos and Machu Picchu, but I don't want to die in the Galapagos.  My friend suggested I go see it at an IMAX.  I have degranulations at higher elevations (above 11,000 ft.) so I guess Machu Picchu is out.  I don't understand why they affect me like that, unless it's the stress of less oxygen.

  We took a lot of trips out of the country before I was diagnosed and did pretty well with just Benadryl, Zyrtec, and Pepcid PRN.  I think I could do okay, but there's always the things we don't anticipate....

  In case people don't know, it's important to carry a letter about your meds and a signed prescription for them if you travel outside the U.S.  A lot of countries will check visitors' bags when they arrive, and you need documentation to prove that you're meds are legal.  The last thing anyone wants is to have meds taken away at Customs.

 

Thanks for saying that, but I'm not all that brave and have to talk myself into taking risks.  I also have to resign myself to being on higher doses of antihistamines every day while traveling just to be safe.  I was so conscientious about it on my last trip that I felt wonderful the whole time.

I saw that the authors of some research that Lisa found are based in Verona, Italy!  I think I might feel very comfortable there.  Isn't Dr. Escribano in Madrid?  Maybe I should contact mast cell doctors in advance in every place I want to go.  Hmmmm....

The plane is another story.  I do fine on planes as long as I pre-medicate with antihistamines.  However, sometimes the air has been bad on planes, and I've had to take extra.  I don't travel by plane in the hot summer, because I'm terrified of being stuck in a boiling hot plane on a runway for a couple of hours.  My best trick is to make sure I have enough of all my meds 2 weeks ahead, and to pack everything 3 or 4 days ahead of the trip so I can be sure to get plenty of sleep the night before a trip.  I also carry an empty water bottle through security and fill it with ice water on the other side, so I'll have it during the flight.

There are a couple of very big differences in our situations.  My kids are grown (20s), and it's so much different to just pack for myself and not to have to worry about anyone else.  Also, being a leaker with only occasional shocking, it's probably less dangerous for me to travel outside the country than for shockers.  My biggest concern is that I'll get some bad food and have to go to a hospital in a less developed place.

It's ironic that I traveled without too many fears before my diagnosis.  It's only after that I've been thinking the risks are pretty high, but I'm working on it....  You're right, though, I have not come to terms with all the limitations yet.  It's funny that I feel more comfortable taking a plane trip than riding in a car for many hours.  That just wipes me out for a few days!

The truth is that we all need to find our own personal levels of comfort in everything we do.  Acute body awareness takes a while to develop.  Those of us who spent years being undiagnosed know that especially well!

Now you guys, do I REALLY need to step in here and give a Mom talk to the two of you about travelling?   I may end up offending you all but as an American living abroad I do know a thing or two about these things and your fears of travelling to other countries is based upon ignorance of what the reality is out there!!    

You will find PLENTY of moldy and bad hotels within the US as you will without!   And seeing that the tourist industry is today very demanding and competitive, you are not often going to find yourself in a dump unless you wander to out of the normal range of tourism.   I´ve stayed in the US in plenty of not so nice motels and and they were supposed to be the quality of Holiday Inns!   So you can´t say that just because you stay within the US you are going to get horrible hotel service.   That´s just plain ignorance!   I´ve stayed in some lovely, simple, but very clean and airy inns in several different places within my region of Brazil - Rio, São Paulo area and I´ve not had a single problem with a single room.  They have been smoke free for that is now law in Brazil, and they have not leaned heavily on the perfumes either, but the places have been clean and comfortable.  So I don´t see the hotels as the problem.  

I also travelled to Ireland a few years ago and found the same level of quality that I´ve seen in the States and Brazil, no difference!  Naturally, the older the hotel, the higher the chance of mold and that´s the same anywhere in the world.

The only thing that would very honestly make me think twice about travelling is the language barrier.  In an emergency, this is where you are going to get in a pinch.  Not so much with the foods, or the rooms, but the ability to communicate to the doctors that you are dealing with anaphylaxis and a very rare disease.   This is what foreigners encounter no matter where they go in the world and there are plenty of horror stories from those who can´t speak English getting caught in the ER without anybody who could translate for them or the doctors.   This is the major issue.  

However, even then....how many patients here on this site have run into a "lack of communication" with the doctors in the ER even in their own native tongue??????

Yet, taking this in account, if you wish to travel to another country, then I say GO!!! ENJOY YOUR LIFE AND SEE THE WORLD!!   But be very WISE about it and PLAN IT OUT very carefully!!!!   I would recommend that a letter be written by your doctor and that a simultaneous translation into the language or languages of the country you will be visiting accompany the signed doctor letter.   You should take your own medications with you also with a doctors letter explaining why and what for.  You should plan to stay in major cities and know ahead of time where the best hospitals and have them listed in your itinerary so that they are ON HAND.  You should also advise the desk at checkin that in case of an emergency they need to call an ambulance for you and also advise the emergency personall as to the nature of what is wrong so that they emergency personell get off on the right foot.   You should also have your emergency information translated into that language of the country you are visiting.  

Now, if you think this is exaggeration and that this is enough to make you not want to travel outside of the US, I must say that the last time I was in Miami airport I could NOT ORDER ANY FOOD for nobody at the restaurants could speak English!!!!!   Since I speak Portuguese and not Spanish it was needless to say very draining to try to even get a donut!   I can´t immagine what we would have run into in asking someone to call an ambulance!  And I´m not exaggerating either, this is what I found when I was in Miami airport.

So, I do think  you can indeed travel to South America, Africa, Australia and many other countries, but you are going to be limited going up to Macho Piccho for if you got into a bad situation, you won´t find help way up there.   Santiago would be LOVELY to visit and that´s one city that is on my wish list!  I´d love to go see Buenes Aires as well!!!  And even though I don´t speak English, I think that as long as I say within the beaten path, I´ll be just fine.    I mean honestly, I live in a SMALL town 2 hours west of Rio and I´ve learned to make my way even when my children were infants and I could barely speak Portuguese, I still managed.    I think 2 weeks in Santiago sounds like HEAVEN to me and I´d be there in a blink if we had the money!!!!!


So, Joan, if you´re game, I´m up for you coming down, sweety and I can take you to some out of the way spots where you would feel totally comfortable for you are right, I´ve found doctors to help!!!!  

But one last thing.... don´t believe the image that Hollywood sells of other countries!   And I sure hope that the other countries don´t believe in the image that Hollywood sells of the US or we´re in big trouble!!!   YIKES!

Oh I was writing a reply, but Joan pretty much said all the similar things that I would have! Definitely neither one of us was implying that the hotels are less clean than US ones. The hotels don't bother me at all, so I don't have to be as careful in that respect as Joan (in regard to the air and the fabric detergents, etc.) My main issue with travelling is that to feel secure, I need to be in a city with a major hospital just in case. I feel more comfortable gauging that here in the US because this is where I am from and I have my own opinons of various places in regard to "medical response safety". There are simply places I will not go in my own country, because I know they are too remote. When I think of travelling outside the country, I will only consider similar big cities that I know will have all the updated equipment and technology.

Your idea of carrying a doctor's protocal translated to the proper language is a fabulous one. It is so important to get them to understand how to help you and that they need to help you if you fall ill. You don't have to be outside the US to have those problems. When I was in Maui and went into major anaphylaxis (before I was diagnosed or on meds), I had to travel by ambulance at least 40 minutes to get to their only hospital on the island! Then they had no idea how to help me and they didn't really believe I was having any problems. (Of course, I didn't know I was in anaphylaxis and how dangerous that is without any meds!) Luckily, they just followed my husband's recommendations on what to do for me. So, now when I think of travelling, that is a memory I don't want to repeat!

I think that travelling might be okay if one watches their triggers really carefully. Many of us know what triggers us the worst. For me, I honestly would barely eat if I went to another country. Sad to say, but true because food and stress are my 2 worst triggers.

I agree with this prespective.  This is why I kind of live by "have kitchen, will travel."  I know food is a huge trigger for me as well as the cold.  I usually try not to make any vacation plans in the winter as I don't know what I'll feel like and then if I'm good I can head up north (that's what we do in Michigan) to go snowmobiling or skiing. But even heading up north means finding a location with a kitchen because food is a problem so I don't want to have to eat out. I also go places that have ER facilities within close range. Because I understand my triggers, I am able to travel and work within those boundaries and try and keep my routine as normal and as "close to home" as possible.

I know that I can't entirely relate to your fears because I haven't had to deal with anaphalaxis and ER visits, but I would like to put in a good word for traveling...

My husband and I LOVE to travel.  Despite all of my health issues, we still try to go on trips a few times a year.  One of my favorite things to do (when I'm well enough to sit in front of the computer) is to look for our next vacation spot and then find out all about it.

I actually find that I feel BETTER when we're on vacation.  I wondered if maybe it was because of something at home, but I realized I didn't generally get this same improvement when we went to visit family (in four different locations).  SO, my hypothesis is that relaxing in a wonderful environment and doing fun things with my spouse helps reduce my stress and improve my symptoms.

We've not ended up in ERs overseas, but we've both had to call doctors to the hotel (in Playa del Carmen and in Nevis) and have had wonderful English speaking doctors who took great care of us and listened to us as being knowledgeable about our own medical conditions.

We do try to limit the number of places we go on any one trip, as I get way too tired schlepping around all over.  I also plan my trip so that we're doing fewer activities at the end, knowing I'll be worn out by then.

All of the advice so far has been great, but I also just want to suggest that you think about how much you will ENJOY your vacation, and how much you'll get out of it, how it can help make you feel better, and maybe you won't feel so anxious about it.   If you plan your trip so that you're confident you have the information and meds you need, and an itinerary you can manage, I think you may find yourself rejuvenated by the experience!

P.S.  It took me years of resistance, but I now take advantage of the "preboarding" option on all my flights, and frequently request a wheelchair between gates at the airport.  I may not be tired yet, but I know the trip will wear me down, and that helps me reduce my stressors.

I've been thinking about travel too... and I'm seriously planning something around 2013-14.  Here are my thoughts so far:

1) Australia... One of my favorite places in the world is a little town about three hours north of Brisbane called Rainbow Beach.  So beautiful!  I went there in 2003 and it was my first time swimming in the ocean.  It's so clean and the bird watching is incredible.  I saw whales and manta rays swimming in the ocean.  This is the "happy place" I think about when I'm stressed.  I would love, love, love to go back there.  And people speak English

2) Iceland... technically not English-speaking, although a lot of people do because they watch TV/films from North America.  Again... so beautiful!  And CLEAN.  Everything is run on geothermal power, so there's very little pollution.  The fresh fish is amazing.  Reykjavik is a fascinating city to explore... lots of interesting architecture, coffee shops, and knitting.  Expensive to stay in, but the flight is cheaper than Australia.

3) A writer's retreat somewhere in the US...  A couple that are high on my list are in rural areas, but some are in reasonably-sized cities (for example, Santa Fe, which is also a very cool place to visit).  I could travel there pretty easily/cheaply (travel is physically stressful) and if things went bad I could get home much easier.  I like the thought of having lots of time to just write, think, and sleep!

Maybe I'll do some combination of these?  There are other places I'd like to go too... back to Paris or Germany, to South America, to Ireland, to London, spend a while in Toronto, Quebec...  I think the hardest part about planning something like this is knowing that I'm dealing with an unpredictable disorder.  It would be such a disappointment to have a juicy trip planned and then have to cancel at the last minute.  

Heather