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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Safe Vacation Locations >> Travel outside the US http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1325268568 Message started by DeborahW, Founder on 12/30/11 at 06:09:27

Title: Travel outside the US Post by DeborahW, Founder on 12/30/11 at 06:09:27 Joan, Are you seriously considering going to South America? Have you talked to your doc about this? Not trying to be a downer, but that is just something that I wouldn't be up for. What about Europe instead, like a major city, that is?

Title: Travel outside the U.S. Post by Joan on 12/30/11 at 18:07:09  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!! ;D ;D  (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. ;D  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.

Title: Travel outside the US Post by DeborahW, Founder on 12/31/11 at 01:51:24 Definitely everyone has their own individual situations on what they can do or not. Joan, if you were anyone else, I would say that it is just a basic fact of life with this disease that you have to change your lifestyle and expectations and come to terms with that so that you can till be happy and yet healthy. HOWEVER, you aren't anyone else and you, Joan, probably know more than me about all the medical aspects of this disease and how best to keep yourself stable. So, I know that anything you choose will turn out safely for you. My personality has always been less adventurous than many even before I got sick. So the anticipation/anxiety of venturing somewhere now even a bit less developed than the US would just do me in for sure. LOL. I so much want to travel to Europe, specifically Paris, Italy, Scotland, Ireland, etc, but I have to get over my anxiety of flying first and then get my mindset to handle leaving my safe spot (the US) so that my mind doesn't stress me into anaphylaxis. I have been to England, but that has been it thus far. Even flying to Hawaii threw me into anaphylaxis (although I was also sick with a virus which didn't help at the time and undiagnosed, so no meds).  So, I may have to just live vicariously through you until I can reign in my own anxiety about traveling worldwide! LOL

Title: Mast cell specialists in Verona, Italy Post by Joan on 12/31/11 at 16:05:39 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!

Title: Travel outside the US Post by nikweth on 01/03/12 at 08:37:39 The extra meds is a great tip. I always carry two pharmacy bags. One goes in my purse and the other in my bag. Just in case. Before I was diagnosed, I took a mission trip to a port in Alaska that was only reachable by bush plane. About 10 days in, I went into somebodys house that had a ton of cats/dogs that they fed food with a fish byproduct. I had to use an epi-pen and it scared the pants off me knowing I was 2 hrs by bush plane to the nearest medical facility. I would never be so risky again but if I would travel somewhere if I knew I had access to good medical attention. But, let me add, when I know I'm traveling, I am extra, extra cautious for a few months before the trip and on my best behavior to avoid all triggers. I'm probably in my best shape prior to a vacation and I don't vacation in the winter because I am triggered by cold not heat. December is awful for me.  It just takes careful, careful planning.

Title: Travel outside the US Post by Lisa on 01/04/12 at 06:21:08 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!

Title: Travel outside the US Post by Joan on 01/04/12 at 07:42:59 Hi Lisa,   Thanks for the tips.  I've been making a list of what I need to do to feel safe, and you've given me some things to add.   I wasn't saying that moldy accommodations can't be found here or that they're often found other places.  It's just something I have to consider, because it has been a problem in the past, and language barriers add to the difficulty.  I think of it as another hurdle, something I just need to figure out before we go.  When we went to the Florida Keys last month, we rented a house, and I spoke with the owner in advance about scented products, the standard of clean I need, etc., and it was fine.  But, she spoke English.     I've run into many musty hotels here and elsewhere and even fine hotels that had mold growing in the bathroom.  So far, I've felt that in developing countries have been less problems in hotels, because they still use bleach, but I've also found musty rooms with mold in the AC.  Then there's just the air outside.  I have to go places in the dry seasons, or I can get really sick.   One of the up and coming problems in other countries, which has been one here for years, is scented cleaning products.  In Italy, I had a hard time finding unscented laundry detergent and other cleaning products, because I didn't know how to ask for them in Italian.  The U.S. has exported the idea that if it doesn't smell like a sea breeze or a sweet flower that it's not clean.   I think I'll need a translator to contact wherever we'll be staying and ask them if they can clean without scents and wash linens without it, too.  I've also thought about carrying Lysol with me in case I run into shower mold.  But, this is the same in the U.S.  I don't know how many bottles of disinfectant I've had to buy on trips.  In Hawaii, the AC was full of mold, and we had to repeatedly spray it so we could cool the apartment.  Ugh.  It's always something!   I know what you mean about airport food!  Always a challenge.  I try to carry things I can eat whenever I travel, in case I'm stuck someplace.   Great idea about taking a translated letter with me.  Right now, I think we'll go to medium to large cities and take day trips out.  And, I think my husband and I need to know how to say "anaphylaxis," "epinephrine," and "prednisone" in Spanish!''   Traveling safely is extra work and sometimes more expensive, but I'm hoping I can do it safely.  The problem I don't think I can solve is that longing to go to the most isolated, less traveled places.  Waiting for a cure!

Title: Travel outside the US Post by DeborahW, Founder on 01/04/12 at 15:20:24 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.

Title: Re: Travel outside the US Post by Lisa on 01/06/12 at 03:26:53 I very honestly think that the issue here isn't that of where we travel, for you are right Deb, this isn't an issue of US hotels versus hotels in other countries for I've personally found that the standards are all pretty much the same because the clientelle is more demanding than they used to be.   Hotellary is much more advanced than it was over 20 years ago due to how much more demanding the clients are in getting their money's worth out of their travel.  We also have the internet at our disposal and can research our hotel options making the market that much more competitive.   So, I've not found the hotels being such a difficulty. Yet, if you think about it, the REAL issue here is knowing your triggers and trying to provide for a situation similar to home, which is therefore more controlled.   This is the real issue here, not the hotels and their cleaning nor the foods and the preparation of it.   We masto patients never know what is going to set us off and this creates an incredible amount of anxiety.  We're forever walking on egg shells with out disease!  This turns us into Control Freaks as far as our living conditions are concerned.   I don't have an issue with foods, so therefore I can generally relax with this, but I'm having growing sensitivity to smells, so it's becoming an issue now, but my major area of trouble is that of heat and cold and needing a constantly comfortable temperature.  This is not always easy to get even in an airconditioned room!   Our past bad experiences are what makes us insecure and control freaks for when we get sick, we do it in a BIG WAY and then we also find ourselves thinking, WHAT DO I DO IF....!!! The other day I was at the pharmacy when a yellow jacket came into the store.   In Brazil we have airconditioning in the stores, but somehow a bee got into the store and it was buzzing around the clerk who was working with me and the bee came my way!!   :o   I've NEVER lived in fear of bees and never had an allergic reaction to them, but then the last time I got stung by a yellow jacket I was about 12 or so and haven't been stung since.   Well, the way I react to things now has me petrified as to what would happen IF I got stung and I backed away and told the clerk that I was highly alleregic to bees and that we'd all be in trouble here if I were to get stung!!   I did this as a warning to the girl so that if by chance I did get stung, then she was already aware of the medical emergency this would put me into and the fact that I'd need an ambulance SOS! So, just even going anywhere isn´t the issue, the issue is that of knowing what to do and being prepared for an emergency and how to deal with it should it arise.    Get these issues resolved and you can travel about anywhere in the world you want to go!!!   WITH PEACE!!! :)

Title: Re: Travel outside the US Post by nikweth on 01/06/12 at 07:12:32 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.

Title: Re: Travel outside the US Post by Joan on 01/06/12 at 14:57:34 Yes, Lisa, that's true for me, too.  I want control over my environment, and when my food, lodging, or flying environment is in someone else!'s hands, it's a little unnerving and stressful.  I always take food with me for the airplane.  My preference is to stay in places that have kitchens or at least a refrigerator and a microwave.  Restaurants are difficult in English speaking countries, much less in other.  Sometimes it's just easier to cook than it is to go out!

Title: Re: Travel outside the US Post by KatFromMD on 01/19/12 at 10:55:49 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.

Title: Re: Travel outside the US Post by Anaphylaxing on 01/19/12 at 13:13:24 I'm probably on the cautious/paranoid end, but even before I got sick I preferred traveling to places with recognized medical care and large medical centers. I was about to travel to China then was told to watch out for fake blood products if I was transfused; Well, that changed my mind in a flash. I got sick in Mexico and it was terrifying. I have a friend who had a head injury there and was mistreated resulting in permanent brain damage..  ..Anyway, I know each of our experiences and opinions are different, so just sharing. Now that I've been sick and have anaphylaxis, I am determined to only go places with good medical care. Not that I do much more than leave the house these days. But I had to travel to receive care earlier on. I wore a bracelet, brought a med list. If I was going to a country based in a different language, I would get translations of all my illnesses/meds etc But I'm REALLY hoping to get back into travelling once I'm more stable. It is SUCH a wonderful thing!  One of my favourite parts was the eating tho (yes I'm a pig), so that part might need to be modified ;) 8-)

Title: Re: Travel outside the US Post by Starflower on 01/22/12 at 01:41:02 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

Title: Re: Travel outside the US Post by Joan on 01/22/12 at 11:42:32 Does everybody know about travel insurance?  There are a number of providers, and the policies differ, but I do get it for myself when we have a trip planned.  It could be an expensive loss if we couldn't leave on the planned date, even within the U.S..  Some policies also have medical evacuation service as part of the policy.

Title: Re: Travel outside the US Post by Starflower on 01/22/12 at 11:48:59 I do get the trip insurance... and I have medical evacuation insurance.  Unfortunately, some other things (like a retreat) are not refundable.  And... I'm not always able to reschedule at a later time :(   Heather

Title: Re: Travel outside the US Post by goldielove on 01/27/12 at 11:03:46 All I can say is my mother lived for a period of time in Panama and wow the medical care was far superior too what we have here, caring loving Dr's she ended up in the ER with a very sore hip and was unable too walk, she just got the best care they even had an orthopedic Dr come and see her right away and he gave her an injection and wow she was find for our whole stay. He even kissed her good bye and called her the follow two days too see if she felt ok. Once I am a little better I am going back too Panama with my mother and stay in her house for a while and chill by the beach and the pool it might do me good, too get away .

Title: Re: Travel outside the US Post by goldielove on 01/27/12 at 11:05:16 One more thing i forgot she had an xray of her hips and chest b/c she was coughing two Dr's look at her the injection and lots of love and guess what her bill came too 100 dollars amazing, boy do we have it wrong here. And that is without insurance lol

Title: Re: Travel outside the US Post by Anaphylaxing on 01/27/12 at 14:19:54 Sounds like I want to move to Panama! :) 8-)

Title: Re: Travel outside the US Post by Joan on 01/27/12 at 21:14:22 Thanks for posting about Panama. We're really wanting to go to an interesting country where I'll also be relatively safe.  Sounds like a good possibility.  I would assume that the drier parts don't have much mold this time of year.  Does that sound right?  I saw one chart that showed the least rainfall in the south of the country, but don't' know anything yet about the area.

Title: Re: Travel outside the US Post by goldielove on 01/31/12 at 13:17:09 Panama is beautiful and the people are very kind. Basically their summers are our winters and during the summer it can rain a lot but if you go up too the moutain beach area where my mother lives its dry all winter long our summers. She has a house close too an area called coronado where all the expats live I think there are more expats all the time each time I go more and more people are moving there b/c if you buy a house you get 20 years of tax free payments. Also if you are older then I think its 55 you get discounts for evrything and if you go lets say too the bank the older people go first. I am in awe each time I go and when I go too the Dr with my mom she has a primary care Dr there she is so concerned and caring and takes so much time for her then she bills her 25 dollars lol no insurance. But one of my friends who lives in Panama has told me recently the city has become more dangerous in certain areas its a shame as it used too be ok too walk anywhere. Also they have a medical building / hospital run by John Hopkins and most of the Dr's there were trained at John Hopkins I don't know if anyone there knows about mast cell condition though I have not been back since i got sick but listening too you makes me feel as though I should go.

Title: Re: Travel outside the US Post by Joan on 01/31/12 at 15:33:23 I want to go, but whether I'll actually have the courage, we'll see.  Right now I feel pretty stable, so maybe sooner rather than later. I'm not so concerned at having a doctor who knows about mast cell disorders, but rather that they have clean needles, sterile, unpreserved IV solutions and other meds I could need in an ER, and somebody who can speak English.  Like the idea of docs who trained at Johns Hopkins.  Thanks!

Title: Re: Travel outside the US Post by goldielove on 02/01/12 at 13:18:29 All I can say is in Panama they do, I took a tour of a very poor hospital actually in a very poor area. Just walked in and told them my mom was looking too buy a house up the road, its amazing how behind the gated community how they live then you go about one mile and see such poverty. Two years ago when I was well I took my daughter there for Christmas and we bought a whole luggage full of toys for the kids there. We went up the road from my mom's house about one mile and we handed out toys from the trunk of our car you would not believe it how many kids came out of the cracks in the houses and floors and what was so amazing not one kid pushed another they all lined up waiting patiently for their toys and were happy with what ever they got, as they have nothing. One of the children got there late and I felt so bad b/c we ran out of toys and a what I saw still brings tears too my eyes another child offered too share her box of crayons and half of her coloring book with this other child without being prompted WOW. I love it there. I am so happy my mother has  a house there., WHOOPS I got side tracked see my mind is so iffy lately what I wanted too say is that everything was so clean and all the IV fluids were in sterile containers and all the needles were sterile as well, I am a nurse so i was so interested in seeing everything they were so kind too show me around. I was very impressed.

Title: Re: Travel outside the US Post by brigitte on 09/18/12 at 09:14:46 So we're planning a trip to the Atlantis resort in the Bahamas in November! Yeah!  :-/. Needless to say, I'm a bit worried about the trip. It's going to be a long flight, and I'm concerned about fragrances, cleaning products, air fresheners etc. at the hotel. I just called there and they said the do not clean ther sheets with scented detergent or dryer sheets, but that they do spray every room after they clean it with a "sweet smelling" spray. They told me at check in to have them go up and open the door and let fresh air in. I hope this is good enough. I'm also worried because I swell terribly in airplanes (does this happen to anyone else?? I have Shrek feet after flying! Huge and painful!) . I can't imagine what it will be like after an entire days travel. I've been reading through this thread trying to get some tips. Hopefully I will have found a go between doctor to work with Dr. Afrin by the time we go. Anyways, I'm feeling a little anxiety over this today (probably because I broke out in hives last night). Any tips that havent been listed or ones that should be drilled into my head, I'm all ears!!!!! Has anyone been to this hotel??? Thanks!

Title: Re: Travel outside the US Post by Joan on 09/18/12 at 16:09:14 I don't mean to be negative at all, but this makes it very urgent for you to see a mast cell specialist ASAP!  You need to be as stable as possible on sufficient medicines so you don't run into trouble either on the plane or at the hotel. Airing out the room will not remove all the sweet smelling spray.  There will still be enough to trigger a problem.  Even if they don't use the spray that day, it can still linger for several days.  (I've had this experience before.)  I would call the manager and ask for your room NOT to be sprayed with any air fresheners.  I usually say that I have severe allergies and get migraines from it, since they won't understand mast cell disorder.  If they can't guarantee that, I wouldn't go there.  You don't want to spend your vacation in a foreign hospital.  Do also make sure you have room with a balcony or windows that open. You can also run into problems with fragrances on an airplane, and you have no control over what perfume others wear.  I would suggest looking into a mask with a carbon filter to carry, just in case.  You can also try to get a front row seat in the plane, so you won't have someone in front of you.  Talking with the airline ahead of time might help you reserve one of those.  It might cost a little extra, but it would be worth it.  I would also want a row with only 2 seats in it unless there are 3 of you going.  That way no stranger scent danger. As for swollen feet, compression nylons can help that problem.  Definitely talk it over with your doctor, but as severe as it sounds, you might want to get graduated compression of 30-40 or 40-50.  I tried the 15-20 and they weren't enough.  20-30 is supposed to be enough to help with ordinary pooling and clotting, but I don't know what's causing you this problem or what your doctor will say.  I find that panty hose works better and is more comfortable than knee-hi or thigh hi. If it's an all-inclusive resort with a meal package, you'll have to be very careful about food that's been sitting on a buffet table too long.  My allergist told me to eat vegetarian when I travel because it's safer. Be sure to take enough meds with you, as not everything is available in other countries, e.g., I can never find Pepto-Bismol.  Also, meds will have different names. You may already know all this, but thought I'd throw it all out there just in case.

Title: Re: Travel outside the US Post by brigitte on 09/19/12 at 03:09:39 Thanks Joan! Good idea about the plane. And I will call again and ask about the room spray to see what more they can do. That really worries me. And I will go to a medical supply store this week ad look for masks, with a carbon filter!!!' :) I am going to a new doctor this next week. Hopefully he will be able to help me out!

Title: Re: Travel outside the US Post by Joan on 09/19/12 at 08:47:14 You might also want to research if there's a good hospital where you're going and which one has the best ER, just in case.  My doctor has me carry 4 epipens when I'm in the U.S.  You might want to ask your doctor what you should carry for emergency meds. I hope you can get everything okay so you have a fun and safe trip!  I find sea air to be very good for me.  I hope you find the same.

Title: Re: Travel outside the US Post by brigitte on 09/19/12 at 09:02:19 Me too!! I haven't been on a long vacation since I got really sick 2 1/2 years ago! It's weird. I used to be to care free, to a fault. Now I'm scared of everything! It's a shame what this disease, or any disease, can do to a person. I miss those days. Sometimes my husband will reflect on the way I used to be, it's kinda sad. Hopefully this new doctor I'm going to on Monday will be the beginning of some progress for me. I have an overly simplified "umbrella" question to throw out there (out of pure desperation!) for those of you who have found good medical care and proper medication, did you find your life to go back a little closer to what it was before this whole thing started? Or are most days still a struggle? As I've said before, in retrospect, I've been effected by this disorder for about 18 years, so ideally I'd like to experience life prior to that! Haha! That would mean going back to when I was 18! I think everyone felt better at 18!!!! Lol  :D

Title: Re: Travel outside the US Post by Joan on 09/19/12 at 11:11:14 Yes, my life is much more normal (except for the boatload of meds every day and more doctor appointments) than it was before I was diagnosed.  Some days are difficult.  I've figured out how to recognize early warning signs and am willing to cancel my daily schedule when I'm not feeling well.  That helps to minimize lengthy setbacks and flares.  That means I don't put myself in situations where I might have to cancel out when someone's counting on me.   When vacationing, I don't take ANY chances with environment, food, scents, etc., and I never reduce any meds while away.  I would say that most days I can do 80-90% of what I used to do.  On flare days, I try to do 0% of anything. However, and I know I sound like a broken record.  This will probably  happen only after you've seen or had your doctor consult with a mast cell disorder specialist, and you get on the appropriate medicines for your diagnosis  It can take a few months to get stabilized to the point where it's safe to travel internationally, so please don't delay.   As Starflower mentioned in a previous post, definitely sign up for trip insurance to cover every facet of your trip as well as evacuation if you should need it.  There are several reputable companies that are more reasonably priced than the one the airlines sell, especially when you need full coverage for your resort, too.

Title: Re: Travel outside the US Post by Anaphylaxing on 09/22/12 at 16:28:14 Not sure if this is the right place to post this but since we don't know where we're living and planes currently aren't an option we've been thinking about trailers or RVs and possible full-timing They mostly stink and many are made with toxic products so we need to plan far in advance as it would need ages to air out and be made allergy friendly. Wonder if anyone's ever tried this. We thought that way wherever we go if I can't be in the accommodations without reacting, there's a backup. Having a safe car opened my world up so much from being stuck at home. A home on wheels would be extremely liberating!

Title: Re: Travel outside the US Post by Joan on 09/22/12 at 18:32:07 It shouldn't be hard to find a used RV that would have had time already for all those smells to dissipate.

Title: Re: Travel outside the US Post by Anaphylaxing on 09/22/12 at 18:48:21 Yes we're looking at that too but so far hard to find non-smokers with no pets, but we're not in a rush so we'll keep browsing. Gives me hope that I won't be stuck in one spot for the rest of my life even if I stay like this :)

Title: Re: Travel outside the US Post by PamH on 12/23/12 at 05:53:54 Yes I just want to chime in...I can barely leave Indiana, so I know what your feeling Ana! My husband is going on a trip to Floriday.  He is taking his mom down there. Originally she wanted us all to go in 2 cars.  But as some of you can imagine doing it in 2 days like she wants makes it really hard.  I can't drive or ride for 10 hour days.  Was going to try to talk her into shorter days but decieded it would be safer just to stay at home, where I know what I eat, and where I am going to sleep.  I hope some day I can feel safe about getting away!!!

Title: Re: Travel outside the US Post by larken on 01/06/13 at 09:24:00 I travel to developing and developed countries a lot for my work.  I am fortunate that I am not a shocker, since that no doubt would put a stop to my career as I know it because the travel would just be too risky.   It is not easy sometimes, but it's a career that I love and I am trying to not to let my MCAS derail my life.  I often have to soldier through flares when I travel and spent two days in bed on my last work trip as a result of a really bad day of travel over a bumpy road.  Still, I feel fortunate to be able to get around as much as I do.  Fingers crossed that it will continue.   In addition to agreeing with some of the advice shared above, I wanted to add some tips: - Evacuation insurance is very smart.   - Extra routine meds and emergency meds are of course necessary to prevent or deal with flares, plus in case your return is delayed for any reason.  My carry-on makes me look like a drug dealer because I will never leave meds in a checked bag.   - Many larger, better hotels these days have a few hypo-allergenic rooms.  Try to find one and ask them in advance what this means, as well as what the rest of the hotel is like.  Lessons learned:  I stayed at a hotel in Lima where the entire hotel was piped with "air freshener"--even the elevators!--and my hypo-allergenic room was the only place that was not perfumed.  I had to hold my breath walking anywhere! In a vacation rental one time, ALL the rooms had plug-in air fresheners (I think they do this in humid countries to avoid musty-smelling rooms.) In another vacation rental, I spent a night on the couch in the living room because the sheets were washed in super-perfumed detergent.  Thankfully there was a washer and dryer in the unit, so I ran the sheets through three rinse cycles the next day!  Now I ask in advance about these things and avoid places that use them. - Especially in developing countries, be aware of the potential for road fumes (diesel makes me so sick!) and try to book private drivers in advance if you will be traveling around at all.  Developing country cities are bad for fumes because traffic travels slowly and there are few emissions controls. Plus, many mopeds/motorized bikes and tuk tuks, which kick out nasty fumes. Rural areas, especially resort areas that have a lot of tourists, are often much better because traffic is less dense and the roads are in better shape, making road travel easier on the body.  A/C cars are best so you can keep windows closed and adjust the temperature yourself. - Large buses/coaches--especially older ones--vibrate A LOT.  If you are sensitive to vibrations, I would suggest avoiding bus travel.  Learned that the hard way.  Never again.   - Some European countries have one or two mast cell specialists.  Mine is in Spain, though I live in the Netherlands.  He has a network of pharmacists and other doctors in Spain who have been educated by him.  If you travel to Europe, you may want to try contacting the local specialists' offices in advance to ask for a few local resources/names so you have a support network--just in case!! - Of course, some airlines "mist" the cabin with pesticides and hand out perfumed warm towels before meals.  For this reason I bring a clean cloth to breathe through when I need to on the flight.   For those of you like me with a lot of food sensitivities: - Italy has the highest rate of Celiac in the world and they are therefore generally quite aware of dietary restrictions.  All pharmacies carry gluten- and dairy-free packaged foods and most restaurants in the major cities offer gluten-free items.  I told people that I was Celiac and also had a few other allergies and found many restaurants very open to special requests.  I had my first pizza in years in Florence last year and it was soooo good (gluten free, plus I scraped off most of the tomato sauce....but still delicious!). - In many countries outside of the U.S. and Europe, food is more often than not prepared to order from scratch and with whole ingredients.  This gives you the opportunity to make special requests. - My fall back meal when traveling is grilled chicken with rice or french fries.  It's almost universally available. - Try to get a hotel room with a refrigerator.  Much better for storing your own food from the grocery store.   - I always take emergency food wherever I go, especially in airports and on flights (Lisa, I traveled through Miami recently and can totally relate!).  It's usually cashew butter in a plastic container and rice cakes in case I can't find a good option at meal time, plus energy bars that I am ok with (for me, sesame bars and a couple flavors of Larabars).  I take a bit of cashew butter on the plane if needed (or otherwise make my own non-liquid plane food in advance) and check the rest, since it is technically a liquid.   - I also carry plastic utensils in my day bag when on the road in case I need to go to a grocery, where I can read the ingredients on packages and get something to go instead of risking a restaurant. - Ask locals about cultural understanding of a restricted diet.  A co-worker of mine who is Latin American helped to get the message across in Spanish about my restricted diet when we ate out.  He always explained to waiters that my diet was limited for "strict religious reasons."  He told me that he did this because many people outside major cities don't really understand the concept of food allergies and may not be careful on that account, however they usually have strong faith and would respect religious choices.  Interesting! Larken

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