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Thread: Traveling with Lupus - Any good ideas?

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    Default Traveling with Lupus - Any good ideas?

    My husband and I are taking a winter break in March and going to Hawaii for the first time (he just retired last summer.) I'm very excited, but I'm also a little scared. I haven't been feeling so hot the past few weeks (lots of chest pain; some newly emerging joint pain in my hands, hips....) Anyway, I know to pace myself when we get there, and to avoid or prepare for the sun exposure. But I'm looking for any pointers some of you might have for me - I'm particularly concerned about how I'll handle the long flight. Could that aggrevate my chest pain? (I have an on-going history of pericarditis and pleurisy.) How about my hip pain? I'm expecting the long flight will not do them any good. If you have any good suggestions about travel, I'm all ears (or eyes, as the case may be!)

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Hi Jody;

    It sounds like it will be a fantastic trip!

    I don't travel too much, but some of the things I find helpful are...
    * Get enough rest BEFORE you go
    * If you're having any problems with pain or walking, take advantage of the wheelchairs and/or motorized carts at the airport.
    * Take advantage of the chance to board the airplane first, so you don't have to struggle with the crush of everyone at once
    * Drink LOTS of water - yes, even if it means you have to get down the aisle mid-flight.
    * Some people swear by the little cloth face masks - I haven't tried them so can't comment.
    * Look online or at the library for a book on seated yoga stretches - that may help you get through the flight with less pain, as you'll learn how to stretch without elbowing anyone in any inconvenient spots.

    And
    As for the sun exposure - be VERY careful. Long sleeves - with sunscreen too. And of course, my most important tip (which you would have to expect from me....)

    A hat (or several! ) with a brim at LEAST 4" all the way around.

    When you're there - eat lots of wonderful fruit and pineapple.... (only peripherally a health thing - mainly an enjoyment thing!)

    have fun, and we hope to hear a travellogue when you return!

    hatlady
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    Thanks, Hatlady! I have 3 'packable' hats and two long sleeved shirts with UV sunblock in them. I hope to buy some kind of swimsuit coverup before I go that has the same. I have lots of 50 SPF sunblock, waterproof (gotta' do a little snorkeling!) I like the idea of the seated yoga stretches. I'll check it out. My hubby is really great about letting me pace myself and just going along with the program, so that'll help too. I've been thinking about getting a folding cane. I don't normally use one anymore, but I also don't do a ton of walking anymore - this might be good insurance. Thanks again.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    I travel a ton for work and i try to sleep on the plane so my body is forced to adjust (however it still doesnt help the migraines)

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    Jody,
    Another thing a lot of people don't know is that the bulkhead seats on an airplane are reserved for handicapped people (and you must ask for it BEFORE accepting a seat assignment and printing your boarding pass). They are released 24 to 48 hours before the flight to the general public, if they are not claimed by people with problems. I always call the airline after making my flight arrangements, explain that I have severe joint problems that worsen when cramped in the regular seats, and that my physician suggests bulkhead seating. I have never been refused. You can then stretch your legs out better, not to mention finding it easier to get up when you need to do so! Occasionally an aircraft has the emergency exit in the bulkhead aisle. I cannot remember which craft it is, but it could make a difference when you are choosing a flight (I always check on that). Also, if you forget to do this, and print your boarding pass without checking that your seat assignment is definitely bulkhead, once you print that boarding pass, you are sunk. I did that once, assuming the person who made my reservation was telling me the truth about my seating. What he actually did was to plug me into a seat that had been randomly chosen as a "handicapped" seat (one of the things they do to meet guidelines or requirements), but it was actually way back and in the middle of a row! You would not believe what I went through to get that corrected (had to send my husband to the airport with the boarding pass that night to get it fixed). Just don't let that happen. You can preview the location of your assigned seat during the check in and boarding pass printing process.
    Sorry to write so much, but I travel this way, not only because of my joint pain, but also because of numerous fractures to my pelvis that also scream when crammed into the regular seats. Those bulkhead seats are a lifesaver for me!
    Hope this helps.

    Susan

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    Thank you, Susan - that's a really great tip. I'll make that call and see if I can get a bulkhead seat. That would be so much easier on my hips.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Hi Jody -

    I'm so excited for you to get a vacation and get to go to beautiful Hawaii! Especially this time of the year, seeing some blue sky and eating pineapple does wonders for the soul!

    I have practiced yoga for the last 4 years and I do believe it really helps me when traveling. On the plane, sometimes I even do a little yoga by the restrooms (standing, of course). Anyhow, there are several things you can do from a seated position, and I thought that was a great suggestion from Hatlady!

    Everyone else has already given you lots of great advice. I hope you have a fabulous time. Just remember, a vacation is just that - a vacation. Don't overdo it or think you have to see everything. Pick out a few things you know you'd like to do and would be really happy if that's all you got to do. Then, anything else you feel well enough to do will be like a bonus! Schedule in "down time" and get plenty of rest.

    Have a fabuous time!
    Missy

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    Thanks so much, Missy - good advice!
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Oh dear, A big trip like that sounds way too stessful. I should probably go for you just to save you the trouble. No trouble at all, it it just the self sacrificeing kind of person I am. What? Trying to get away from the 10 to 16 inches of snow coming our way??...Maybe. Who me jealous?? OK, maybe a bit, but still hoping you have a REALLY good time. And filing all those great traveling tips for future reference. I hope you and your husband are enjoying his retirement and enjoy your trip!!

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    Aloha Jody,

    March, Hawaii.....woolala....envious. What island...? Waikiki? Lots of places nearby....and the wikiwikis (hurry, hurry transportation buses) can take you most anywhere..

    I lived on Oahu in Aiea for several years and island hopped..Used to vacation there annually once I returned to the mainland. Was married in Wailea, Maui....

    Don't forget the underwater camera...

    While at the beach...bring layers. Swimsuit, sleeveless t-shirts, long sleeve t-shirt, and button down shirts. So, if you are able to tolerate the sun with the SPF, you can protect various parts of your skin..back, or chest or arms...at different times.

    May seem silly, but I buy Victorias Secret cotton P.J sets...and wear the bottoms as outdoor pants in the summer, or their cabana pants with long flowing white cotton shirts.

    Any India clothing stores nearby, they have great light color summer outfits. I've bought a few online since I cover up. I dress in light summer clothing layers.

    Or purchase a muumuu (long colorful dress)...the women wear them to work on Friday....Aloha Friday as they say it.


    While on the plane, drink plenty of fluid, H2O and also the night before. If you have hooves like mine, wow they swell. I run mine under cold water and soak in ice when I arrive..sit on the sink or edge of tub.

    Avoid sugar drinks, soda and salt. Walk about the cabin regularly and if possible bring your own pillow. Keep lotion in your carry on,To keep you face and hands moist. And size is limited now. Check the rules and regs. Bring a small package of sanitary wipes for you hands ...germs on a plane can ruin a vacation.

    And don't cross your legs while on the plane..if must at ankles only...and don't take your shoes off while flying. You may never get them back on.

    Eating, they have lots of plate lunches..but eat outside the cities in local areas, true local cuisine and much cheaper. Most food is flown in...beef, milk products...so you pick up the surcharge.

    So when is the big day...take it easy from today and on and it will be a great vacation. Don't stress and worry about tomorrow...and what you may feel like...as the saying around here goes...Live in the day...

    Malama pono (Take Care)
    Oluwa
    I have Lupus. So *^#@! what.

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