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Thread: Traveling with Lupus

  1. #1
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    Default Traveling with Lupus

    Hi all

    Just wanted to see what everyone's experience has been in regards to traveling with lupus. I haven't been on a holiday since being diagnosed mid last year and I'm heading off to Europe in a few weeks (from Australia) for about 3 weeks. Got a relatively full on holiday planned at least for the first week anyway as my partner has a work conference in Estonia so everything has been planned for us!

    I'm kind of concerned about the weather for a start, I know it's going to be cold over there and when I was diagnosed last year it was in winter (granted winter in Perth isn't particularly cold) but I found that while recovering from my first flare I struggled with the cold weather and the pain that caused my joints.
    I have anti-phospholipid syndrome too so the clots are a bit of a worry for me being stuck on a plane for so long. Obviously im on blood thinners now and will have to wear those oh-so-attractive anti-embolism stockings but the last time i got on a plane i ended up with a DVT which was the beginning of all the lupus symptoms too.

    I guess I've got to take it easy which I'm not used to doing just yet but just wanted to see what everyone's experience has been or if anyone has any advice from their travels and managing symptoms etc.

  2. #2
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    There have been several threads on this. If you search "vacation" or "Travel tips" you will find some but in answer to your question here are a few tips for you.

    1. Make sure you wear your med-alert. If you don't have a med-alert (and even if you do) make sure to keep a small post-it with your medical dx, meds/rx amts, name and emergency contact number behind both your driver's license and passport ids. If the rx has a different name in the country you are going to - use the name that country is familiar with. Also, make it a note in your cell.

    2. Look up your insurance's overseas medical policy a few weeks before you leave. Find out what they will and won't cover in an emergency and what forms of theirs you may need to travel with as well. Also, make sure you medical id # is the same abroad as it is at home.

    3. Call the airline and arrange for a wheelchair escort to the plane at the departing city and from the plane to baggage claim at the arriving city. Airports are long and tiresome to walk through and the valets are there to help people like us who need it and it's free (at least over here) so take advantage.

    4. When on the plane take short brakes to stand and stretch. Explain to the stewardess that you have a medical issue if need be. Go take "bathroom breaks" to give your legs some relief. If possible also do a little stretch and flexing.

    5. Make sure you don't over do it - you don't need to see every sight and go to every landmark. You can see them all on the internet if you don't make them this time and it's not worth enduring a flare to stress over things like that.

    6. Try to take a nap. Remember to stay hydrated. Keep applying sunscreen. Even though it's a different season the sun is still the sun. And the days are beginning to get longer in Europe so there's more of it.

    7. Whenever possible, try to not be on your feet. If you have the opportunity to wheelchair access at any of the places you will be, use it. You may want to call ahead and see if you need to book them in advance first.

    8. Have a great time! Remember to relax! If you aren't able to stick with your plans/schedule be flexible enough to allow your body to go with the flow.

    9. Don't forget to post pics on WHL when you come back! *wink wink*
    Last edited by SandyR; 04-06-2011 at 07:48 AM. Reason: Added a note to #1 thanks to a reminder from Steve's post.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  3. #3
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    2 little points about medications.

    make sure you have enough.

    check that they are not prohibited in any country your plane touches down in.

    also enjoy

    enjoy

    enjoy

    enjoy

  4. The Following User Says Thank You to steve.b For This Useful Post:

    SandyR (04-06-2011)

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    Quote Originally Posted by steve.bryce View Post
    2 little points about medications.

    make sure you have enough.

    check that they are not prohibited in any country your plane touches down in.

    also enjoy

    enjoy

    enjoy

    enjoy
    I knew I was forgetting something important. - head smack! - meds of course!!!! LOL. Also - if possible only pack your meds in your carry on so that if your checked bag gets lost, destroyed or delayed you have your meds on you. Oh - and also use the original perscription bottles whenever possible so you can prove your perscription pills are just that.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  6. #5
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    Hi there..

    My advice is to always have Prednisone, or meds that you need incase of a flare up! I always have like 5 different medications with me, especially when im going somewhere hot or with sun incase i get a flare. Just be careful and keep warm too! Dont expose yourself to the cold so much. While your in Europe, ill be in Hawaii!! I have to take precautions as well!

    have a great time!

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    Have a great time Nat
    Another tip When I went to Asia my Doctor wrote me a note explaining why I was carrying Steroids etc (not that I needed it) but it does'nt hurt to have proffesional verification.
    Definitely use Wheelchair assistance if its avaliable speeds things up considerably (I hated the idea) but it really reduces the stress of crowded Airports.

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    SandyR (04-07-2011)

  9. #7
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    Thanks all for the advice!!! Merrilyn - I thought to get a note from the doc, luckily because he prescribed me endone in case of a flare too. I cant imagine that being the easiest thing to get through customs!! Will have plenty of photos to share when i get back!

  10. #8
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    Here in the US you can ask for a handicapped accessible room. It may or may not be available. Should you aquire some wheels along the way it will help. Also ask the hotel if there is a shower seat so you can sit to shower should you be fatigued or dizzy. Ask the airline to put you in the row with the most leg room and have a note saying you are prone to blood clots and need the knees to have more room. Might work. Some airline charge more for that seat but it's worth it to not have a clot.

    When I went to Ukraine to adopt my son I had what I believed to be Chronic Fatigue syndrome. I carried extra meds in the event I became ill and the medical care didn't have the right meds. I had super duper antibiotics from a web site about adopting kids, the GP gave me crappy antibiotics) I forgot the asthma meds and ended up having the US embassy call for urgent care to do an inhalation treatment. Never had one before but Ukraine doesn't vacuum like we do. I did use herbal tea for asthma. It was funny trying to use my Latin to discover the latin names of the herbs with the pharmacist's Russian and Latin. So have the meds you might need in your worst medical situation. Have the phone # and address of the medical clinics available.

    You may want to checking to emergency evacuation insurance. This is if you became seriuosly ill( clot, heart attack...) the insurance puts you on the quickest route to a major medical( Germany) or home. An adopting family didn't have it when they had a car wreck in winter in Ukraine.

    I used a valet wheelchair but forgot I was supposed to tip them. I felt guilty. I have used my sons wheelchair to carry my luggage. He's a double below knee amputee who hates when mommy makes him bring his wheels but it's more for me than him ; ) Expect the security check to take longer with the wheelchair, sometimes. Never travel with crappy luggage. I bought the suitcase you can push with one finger. I was also able to strap my carry on to the top of it so I didn't carry a thing. Once the big suitcase was gone I think my carry on had little wheels, I can't remeber or that could be what husbands are for???? The suitcase has 4 wheels on the bottom and is balance well to not flop over. I think it's a firm sided one but not heavy. I hate the tilting wheeled suitcase as they are not as light as you want. Borrow a good one if you have to. We have outlet stores and stores that sell minor defective suitcases so a scratch will make the new suitcase affordable. Pack lightly.


    Some airport security will confiscate meds, will want a bribe to release meds. I divided the meds between my husband and I and we went through a few people apart. If they asked why my husband had them I could say oh sweetie, come here. They did question it but we made it through with all meds and cash.
    I was so excited to adopt and enjoy the trip I wasn't sick even though I had horrible bronchitis, must be the baby hormones and the beautiful scenery and incredible European food.

    I did bring sleeping meds though I didn't normally take it. I felt if I was unable to sleep I would get sick. I use benadryl and antihistamine to sleep. It came in handy with the asthma attack. I might have taken some to make sure I got some rest.

    happy travels

    Teresa in CO ( my Ukrainian baby is 13 now)

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    SandyR (04-08-2011)

  12. #9
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    I've traveled to Hawaii, Japan and Greece in the last few years.
    I have little to add to what you have been told. I don't know if you have any Sjogren's symptoms,
    but flying can make dry eyes worse. I take small sample bottles of eye drops with me.
    If you have dry skin, take a small container of skin lotion.
    Be very sure to walk often on the plane.

    My rheumy prescribed a wheelchair for me, so I have my own. It's great! I was lifted to the top of
    the Acropolis in it! In Japan, I was treated with great respect because of my disability.

    Enjoy yourself, but be sure not to overdo it.
    Hugs,
    Marla

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