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Jessica’s Coping with Lupus Corner

Traveling Smart with Lupus

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Dear Jessica,

Do you have any tips for staying healthy—or coping with lupus problems—while traveling overseas?

–R.O.


Dear R.O.,

This is a great question, especially with the heavy summer travel months approaching. Just because you have lupus doesn’t mean you can’t head out of town. In fact, getting away, even for a day, can be great for relieving stress and getting new perspectives on life.

But preparation is key. I recommend reading Tips for Traveling with a Chronic Illness! for ideas on staying comfortable while on the road, especially if you’ll be heading out with kids or by car.

Great tips and strategies also can be found on the Centers for Disease Control website and in The Lupus Handbook for Women by Dr. Robin Dibner and Carol Coleman.

Here are a few I think you might particularly helpful!

First Steps

  • While this might seem obvious, the first and most important tip is to NOT travel while you are in the middle of a flare or experiencing an illness of any kind.
  • Tell your rheumatologist about your plans before booking your trip. Ask her for suggestions as well as:
    • help in devising a health plan for your trip in case of an emergency
    • a letter listing your health conditions and prescriptions
  • Pace yourself with the planning process. Start at least 6 to 8 weeks before departure.
  • Once on your trip, schedule time for rest. Don’t pack in too much to do in one day!

Planning for Emergency Medical Care

  • Going overseas? Travel to a country with good sanitation systems, clean water, and adequate medical facilities.
    • Get the name of a doctor and a major medical center in the area where you are visiting.
  • Find out if there is a lupus chapter in the area you are visiting. If so, give them a call to find out what they offer and see if they can provide you with referrals in case you need them. (And you can always contact me directly for contact information to a lupus chapter virtually anywhere in the world!)

An Ounce of Prevention…

  • Ask your doctor for medication in case you have a flare. This may well be prednisone, especially if you are currently on it or have recently been on it.
  • Pack an extra supply of all medications—even over-the-counter ones. For safety and backup, pack a supply in your carry-on luggage and the rest in your checked luggage. Keep an extra prescription bottle or two so that you can pack the second set in original bottles.
  • Make sure you’re properly immunized for the place you’re visiting—after first checking with your rheumatologist that they are all safe for you to get.  
  • Stick carefully to your every-day sunblock regimen. You need to block both UVA and UVB rays, with a minimum “Sun Protection Factor” (SPF) of “30.”

And Just in Case

  • Before take-off, ask your doctor to help you get a supply of:
    • Antibiotics—in case you need some to fight an infection
    • Antacids—in case you get an upset stomach from a change in food
    • anti-diarrhea medicine—in case you get traveler’s diarrhea
    • antihistamine—in case you have an allergic reaction (if you get dry mouth/eye, get a special antihistamine recommendation from your doctor).
  • Trip insurance is a good idea if you can swing it—to cover costs if you get sick right before you leave and have to postpone your trip. But double-check that it includes pre-existing conditions, your return fare, and any prepaid expenses such as hotel accommodations.
  • Call your health insurance company to find out what kind of coverage they offer if you are out-of-state or abroad.

Phew! Now that all the planning is over, time for some play!

Pacing yourself not only means stopping and resting, but also taking in all the wonderful things in the new environment – people, smells, food, scenery.

Don’t forget a camera!

We’d love to see photos of you happy and smiling during new adventures on our Facebook page. Having fun is the most important part of your trip. Be sure to enjoy it!


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Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.

Comments

 Dear Denise, I think it

 Dear Denise,

I think it would be best if you spoke with your rheumatologist about this issue, so s/he can give you a more accurate opinion and sound medical advice. 

 

Warmly,

Jessica Rowshandel, MSW

I have systemic lupus and I

I have systemic lupus and I want to travel to Cape Town, South Africa in May of 2013 since it is there winter, and rainy season, so the hot weather wouldn't be too much of a bother. My lupus is mostly affecting my hair, skin, joints, and nerves. I have fibromyalagia and arthritis in almost all of my joints. All of my family members think I shouldn't go on this trip because they feel like I will get really sick and possibly die from the water, food, insect bites, malaria, etc. I really want to go but I know that even when I catch a simple cold it lasts for months and I have to have several rounds of antibiotics before I feel remotely better. I don't want this disease to control my life but I am aware that I have to work around it. Do you think this trip is a good idea for someone like me?

Hi good to see people

Hi good to see people understand how lupus patient gone trhough..im new here please have more information regarding travelling, is it very dangerous or do i hae to choose a country to have my vacation..esp. too hot weather..

 @Trena I am so sorry to hear

 @Trena

I am so sorry to hear all that you, your family, and your daughter are going through. Please feel free to call or email me so I can try to connect you with some ongoing support in your area: 212-685-4118, ext 32; jrowshandel@lupusny.org

 

Warmly,

Jessica

 @Alicia, I'm

 @Alicia, I'm glad!

 

Warmly,

Jessica

 @Emma, You can try the

 @Emma,

You can try the Arthritis Foundation of South Africa

http://www.arthritis.org.za/

 

Warmly,

Jessica

My Daughter has sever lupus

My daughter has severe Lupus she has all the symptoms of Lupus. She has been in the hospital 17 times sence Sept. 2011. She is always in sever pain fevers, Lost all of her hair. Rashes, Blisters on hands and face.The doctors says she has all of the lupus types. Plus 4 other autoamun dieases. She is in the hosp. As I speak. Her blood pressure runing threw the night was 52/30 Her blood counts are down really low. w/b count is 1.7 her platlets are now 120000 they have been as low as 15000 her heboglobun is 8.4 She also has Graves diease. She can't function at all she use a walker or I have to help her she can't do much for her self she has to use a shower seat cause she can't stand to long. She is in bed most of the time. She has no life at all. She has two kids 11 and 8 one baby girl that died last year at 6 weeks. I am her mother it is so hard on me to see her go threw all this. I don't know how long she will live. And I try to spend all my time with her and her kids. They are also suffering cause they have no father figure in there life. And watching there mother go threw this is awfull. She just turned 30 in Dec. 2011 she has had this for about 5 years. She is on disability and can no longer work. This is a dreadful diease and I wish they could help her but so far no luck they have tryed everythng and nothing is working she is on predisone 60Mg a day and all kinds of other med. to many to count . God bless all that have it.

Best wishes

Alicia, I want to know how you are doing since your diagnosis. I do a lot of research on my own and believe that the doctors are missing something. They don't seem to think my symptoms of symptoms of fibromyalgia are connected to Lupus. We have a strong family history of Lupus and all my symptoms point in that direction. I am about to change doctors and find someone who will listen to me. Keep doing your own research and being your own advocate. Best wishes to you!

What a coincidence I just had

What a coincidence I just had my 3 month check up appoiment and I'd ask my physician the same question you just aswered in this article, I was diagnosed with Lupus SLE about a year ago and everything is new and a mystery to me, all my knowledge about this disorder I've learned in reading and investigating the subject. My physician didn't give me a lot of info, he just gave me the green light to travel no more details that's when I came across this article, so interesting and appropriate.I am so greatfull to have this kind of help that informs me about my illness.

Hey Emma, I came across your

Hey Emma, I came across your comment now. I'm from CT and was diagnosed with SLE last year. We just missed each other because I was a student at Stellz last year... :-)

Lin

Great article!

Great article!

Lupus contact in Stellenbosch or Cape Town, South Africa

Hello, I found your blog post through google and thought I might as well ask you if you have any suggestions on Lupus contacts in South Africa, Stellenbosch preferably but Cape Town would be alright. An answer to my email would be outstanding! :)

Thanks alot!