View Full Version : Traveling with Lupus - Any good ideas?

02-02-2008, 10:11 AM
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!)


02-02-2008, 12:18 PM
Hi Jody;

It sounds like it will be a fantastic trip! :D

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.

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! :D ) 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!


02-02-2008, 03:17 PM
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.


02-02-2008, 04:19 PM
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)

02-02-2008, 04:26 PM
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.


02-02-2008, 04:33 PM
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.


02-04-2008, 10:02 PM
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!

02-05-2008, 04:14 AM
Thanks so much, Missy - good advice!

02-05-2008, 06:35 AM
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!!

02-05-2008, 08:49 AM
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)

02-05-2008, 06:29 PM
What a wealth of good ideas, Oluwa. You are a treasure! You lived on Oahu? How I envy YOU! What was your favorite thing to do there?

We're going to the "Big Island." Originally, planned that because we have a friend who winter's there. But he has since had a family crisis and won't be there this year. Go figure. But, we have a rental car and have 'picked the brains' of our friend for good places to see, reasonable restaurants, etc.

We rented a condo so we have a little knock-around room and kitchen for fixing breakfast, snacks, whatever. If I need to rest, it'll be so much more relaxing than a hotel room. Condo is right on the beach - Kona side. Just a week, but it'll be a wonderful break.

I have a lot of the loose, layered kind of clothes you talk about. I will check out Victoria's secret for the cabana or pajama pants - I like that idea! We leave March 7th; return the 14th. March is a really terrible month in Northern Minnesota, so I'll be glad to miss a week of it. I'll have a full report when I return.

Thanks again for all of the good ideas.


02-07-2008, 04:57 PM
I am so excited for you to be going to Hawaii. I was married in Waimeia Falls park in 1989, it was absolutely beautiful.
I haven't been on a plane since I was dx with lupus. I did however just travel to florida by car. 13 hours. It was the worse trip of my life. My legs bothered me so bad. I ad a major flare up when I got there with my knees and hands and wrists. My hips hurt so bad from all the walking.

I will never drive again but I will take in all the advice everyone gave you for flying. Good luck. Remember this is a vacation so definitely rest, rest, rest.

Have a wonderful time.


02-07-2008, 08:12 PM
Thanks, Kathy! I'm excited, too, but I will rest, rest, rest! I know what you mean about long car trips - terrible for you - so exhausting.

02-07-2008, 08:28 PM

Favorite? Beach, sand, water, more beach, more sand and a Mai Tai. Snorkeling, body surfing....Hanauma Bay. Waimea Beach, oolala..the white sand...I just get dreamy, a big yearning thinking of it. Soon, I will return...

Little knock around room sounds wonderful. With all the eats, evening torch lights, sunset beaches I must guess you will be only sleeping in the condo.

And if you can find a place that sells fruit cups...yummy-oh. Frozen yogurt, mango, papaya, pineapple...macadamia nuts. After finishing it you would wish the spoon and the dish was edible too, wanting more.

And take Manapua to the beach, pork fill buns in a light BBQ sauce. They look like like domes. Some are steamed, white and others are baked, golden. Sometimes they put a sweet paste in them, oh shoot I forgot what ithe paste is called. Some kind of bean as I recall it..... Another favorite...humm.

It would be easier to ask what I didn't like. The list would be shorter. Nothing!

Lucky you...vacation is just around the corner...

And you're welcome...and thank you for the compliment, treasure.

02-07-2008, 08:55 PM
My mouth is watering for tropical fruits.....and I can almost see the beach...!


02-08-2008, 06:25 AM

Enjoy....soon the real deal.

Happy Aloha Friday? Thank God, eh? For all days.


02-08-2008, 01:14 PM
I too lived in Hawaii for a few years, a little further west on Oahu in Kunia. Our favorite island is the Big Island. It is just so diverse! I love it! There's a great fruit stand on the southern point of the island. If you have yet bought a tour book, I HIGHLY recommend "The Big Island Revealed". It's a blue book, and is very good. There's one for each island and we used them extensively when we island hopped.

I've also traveled by plane extensively (try flying from Germany to Hawaii!! ugh!! ). I also carry: ear plugs, an eye mask, a neck pillow, a few snacks, and drink water extensively before and during the flight. I take lotion, hand sanitizer, a sweatshirt, or something to keep warm on the plane (sometimes a travel blanket)....just to name a few things to make my flight more comfortable!

It's so important to get up and walk around! I always try for exit aisle seats. Didn't know about the bulkhead seats! That's a great option. Flying is just so much more comfortable if you have a bit of leg room.

Good luck!

02-08-2008, 03:57 PM
Oluwa, the time will go by so fast - I'll be doing the hula before you know it (that....is....a....scary....picture! :shock: )

Hi, Luvwine! That's amazing - I bought The Big Island Revealed a week or so ago and I've read it cover to cover - it's filled with notes, post-its, highlights!! You're the third person who has recommended that book, so I'm confidant I bought the right one!

I have all those things you mentioned in my travel stuff - the eye mask and neck pillow are sooo important for me! Right before I 'got sick' we took a trip to Egypt - talk about a long trip! I still believe my exposure to something in Egypt (maybe just the incredibly intense sun) was the final straw that caused my lupus to come out of hiding in a big way.

We intentionally DID NOT get a direct flight to Hawaii. We'll have a stop on the West Coast, so it won't be quite as bad for me. Thanks for all of your advice.

02-08-2008, 07:04 PM

Hula on the beach with a lei (lei'd) at sunset would be a lovely sight. Watching someone have fun is not a scary picture. Go on, have fun..you can learn at Luau.

Oh, oh and hey, you can even snow ski. So bring your Minnesota ski boots. Humm, I am sure it the Big Island where you can snow ski.

Enjoy the weekend..

02-09-2008, 11:19 AM
Well, maybe I'll hula...we'll see. :wink:

Yes, you can ski on the Big Island...but I'm not a skiier, and seeing snow in Hawaii isn't high on my list of sights...I can just look out my window at home for another month or two!

02-17-2008, 05:37 AM
Take an empty bag with you. A soft sided one. Pack it in your suite case. When you get to where you are going....buy everthing....and give to me when you get back :lol:

Hope you have a great time. We went to Spain and Germany last February...I had a great time. Drink red wine ... stay safe ... bring us back prezzies ... have fun!

02-17-2008, 02:51 PM
:lol: :lol: :lol: You got it! Lots of prezzies for the gang.....


02-17-2008, 05:39 PM
Jody -

I think the greatest present you could give me from Hawaii is the great news that you had a wonderful time and a true vacation. Then, we can encourage others that this disease doesn't mean stopping, only slowing down and being deliberate. I can't wait to hear about it!

02-18-2008, 07:50 PM
Thanks, Missy...that's so sweet! I will have a full report when I get back. I expect to have a fabulous time, and plan to make this just one of a lot of fabulous trips in my future


03-17-2008, 11:37 AM

You still hanging out in the lifeguard shack?


03-17-2008, 07:39 PM
Some fine lifeguards out there, Oluwa! I'm not a very good water person. :oops: My hubby, however, would snorkle 'til the cows come home...or the dolphins...or something....

On a sobering note...we witnessed a drowning on one of the most beautiful beaches I've ever seen. The lifeguards tried so hard to save him. What a sad day....prayers for that man and his family. :cry:

03-18-2008, 05:58 AM
Awww mnjodette

That's so sad...prayers for the family and the life guard. That must be extremely hard to deal with.

Glad to have you back home in the fold :)

Do start a post and let us hear about your trip.

03-19-2008, 11:13 AM
Oh no Jody, say it isn't so. I just got all bumpy skinned with feeling sad.

The riptide can do a number on a human. Swim parallel to the beach till you can get in, but people always try to swim direct, head on. The waves are like a washing machine when you get caught in the curl. Relax and it will spit you out. I learned the hard way...when I found myself crumpled and sprawled out with my swimsuit bottoms wrapped around my ankles laying on the beach when the ocean spit me out...Spooie...

Instead of people helping, some pointed and some laughed. I laughed as I grabbed my string crochet bikini that got all stretched out and held it up as I walked back to my beach prop spot...

Happy you made it home safe...

03-19-2008, 12:09 PM

Awwww that's awful...I would have helped you ... I would have laughed too, but I would have helped ya :D

03-20-2008, 02:14 PM
Oh, that's so scary, Oluwa. Funny...the crocheted bikini part...but scary mostly! It was mean to laugh at you, when you were probably pretty shaken.

I had a 'near drowning' experience when I was a little kid, just in a local lake, but I remember it so vividly. That's the kind of stuff that can stay with you. (I was so little, I only had a swimsuit bottom - no top....and it wasn't that kind of beach! :wink: )