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flyaway
02-17-2008, 01:46 AM
Can lupus patient go for beach . island vacation?

I personally like to travel but because of diagnosed of Lupus and must limit to sun exposure so make me feeling uncomfortable.

If I want to go for travel, what preparation i need to do?

jesseyleigh
02-17-2008, 11:12 AM
Lots of Tagament and claritin D :) I live in Florida and find that if i look i can pretty much hop from shady area to shady area. I would recomend looking into the winter. The UV is very low and there is less complication with the sun (in the summer even for a second it feels like your skin will burn right off!) and you can realistically wear long sleves and pants!

mnjodette
02-17-2008, 02:58 PM
Jesseyleigh, look for the thread "Traveling with Lupus..Any Good Ideas" and read the replies. I'm going to Hawaii in March and I asked board members for some advice. I received LOT'S of good ideas. I think you'll find some helpful things there.

Jody

hatlady
02-17-2008, 04:06 PM
I agree, try out the "travelling with lupus" thread - some fabulous ideas from people who have travelled a lot.

have wonderful trips and tell us about all your adventures when you return! :D

flyaway
02-17-2008, 10:24 PM
Jesseyleigh, look for the thread "Traveling with Lupus..Any Good Ideas" and read the replies. I'm going to Hawaii in March and I asked board members for some advice. I received LOT'S of good ideas. I think you'll find some helpful things there.

Jody

Okie... Thanks mnjodette and hatlady for the thread. I will go there to visit.. :)

flyaway
02-17-2008, 10:28 PM
I agree, try out the "travelling with lupus" thread - some fabulous ideas from people who have travelled a lot.

have wonderful trips and tell us about all your adventures when you return! :D

Yea, i'm in progress to plan.. I hope i can really go for a trip. There are alot of concenrs that i need to think. The place that i planned to go its really lots of sun exposure.. Not easy to plan..

jesseyleigh
02-17-2008, 10:39 PM
oo i read that i live in a tropical climate those were my suggestions

flyaway
02-17-2008, 10:40 PM
Lots of Tagament and claritin D :) I live in Florida and find that if i look i can pretty much hop from shady area to shady area. I would recomend looking into the winter. The UV is very low and there is less complication with the sun (in the summer even for a second it feels like your skin will burn right off!) and you can realistically wear long sleves and pants!

Thx for ur advice. Shady area & wear long sleves and pant. :)

sick n tired
02-19-2008, 10:32 PM
Hi Flyaway,

I went on my first ever cruise last summer. That was before my diagnosis but it was great. There are places that are shaded and you would need loads of sunscreen. I would get up in the morning and put some on then makeup and then some more and all to sit in the shade.:-)

Have fun and be careful.

Karen

rob
02-20-2008, 09:14 AM
I don't see any reason why you couldn't, but definitely plan ahead. One person mentioned going in the winter months, this is the best advice I've heard. In the winter months, north of the equator, the majority of tropical destinations recieve a significantly smaller dose of UV Radiation due to the tilt of the Earth, and the extra filtering the atmosphere provides when the planet is "tilted", so to speak. This is a measurable, and very noticeable phenomenon. Also, the winter temps in places like coastal Mexico, and the Carribean, are very comfortable in the winter months. Lower humidity in the winter too. Light colored, light weight clothing with full sleeves/leg coverage is a must, and be a soldier. What I mean is, recon, or scout out the little areas of shade on the beach, the boardwalk, where ever your days exploration is going to take you, and use them. It sounds like its all a big pain, but it really becomes habit, and is no reason to not enjoy yourself. Of course, sunscreen should be the constant companion of any Lupus patient always. It's even more important on vacation. Take PLENTY. Plan ahead, and have fun.

stjames13
02-20-2008, 11:11 AM
8)
TO BE HONEST I PERSONALLY WOULD NOT GO TO ANY PLACE THAT I COULD NOT ENJOY THE AREA AND WHAT IT HAS TO OFFER.

IN OTHER WORDS WE ALL KNOW THAT LUPUS IS SUNLIGHT SENSITIVE AND WE ALL KNOW THAT MOST OF THE MEDS WE TAKE FOR LUPUS AR SUNLIGHT SENSITIVE SOOOOO????

SO KNOWING THAT I WOULD PREFER TO GO SOMEWHERE MORE LIKE A LAKE OR IN THE MTS. VS GOING TO A TROPICAL ISLAND THAT IT'S MAIN ATTRACTION IS THE SUN !!!

PLUS DEPENDING HOW LONG YOU HAVE HAD LUPUS FOR ALL YA KNOW YOU MAY FIND OUT THAT YOU ALSO HAVE AN UNDERLYING CONDITION OF DISCOID LUPUS WHICH I HAVE ALONG WITH SLE.

DISCOID LUPUS IS EVEN HARDER TO DIAGNOS AND IT TAKES SEVERAL BIOPSIES AND BLOOD WORK TO PROVE IT AND THEN THE MEDS ARE SUNLIGHT SENSITIVE.

EVEN WORSE IS IF YOU DO HAVE AN UNDERLYING DIAGNOSIS OF DISCOID LUPUS AND HAVE YET TO HAVE BEEN ATTACKED BY IT'S RATH ONE LONG WEEKEND IN TH SUN MAY BE JUST WHAT IT NEEDS TO GATHER STRENGTH AND BREAK OUT FOR THE FIRST TIME. :twisted:

IT'S NOT PRETTY AND VERY PAINFULL... :twisted: :twisted: :twisted:
IT STARTS OUT AS WHAT LOOKS LIKE HIVES ON YOUR HANDS,FEET AND POSSIBLY FACE AND NECK AREAS AND WILL SOON BECOME LEASION;S THAT GET INFECTED AND YOU CAN NOT CONTROL THEM .
NOT WITH PREDNISONE NOR PLAQUENILL NOR CELLCEPT AND USING A SUN BLOCK WILL NOT SAVE YOU FROM THE DAMAGING RAYS....

YOU WILL NEED THE SPECIAL CLOTHING AND WHY GO TO THE BEACH OF YA GOTTA WEAR SUNLIGHT SENSITIVE CLOTHING????

SOON THESE LEASION'S BECOME INFECTED AND NOW YA HAVE TO TAKE EROSCEMA WHICH IS AN ANTIBIOTIC FOR YOUR SKIN BUT THAT WILL ONLY TAKE CARE OF THE INFECTION WHICH WILL LAST LONGER OF YOU ARE ALSO ON PREDNISONE.


THEN YOU GET THE PAINFULL PART.....
ALL OF A SUDDEN YOUR IMMUNE SYSTEM FEELS AS IF IT CAN NOT FIGHT WHAT IS INFECTING YOUR HANDS...WHEN IT IS THE LUPUS....
SO IT BEGINS TO CREATE EVEN MORE WHITE BLOOD CELLS TO FIGHT
IT OFF.
IT TAKES THE IRON RIGHT FROM YOUR BLOOD AND WHITE BLOOD CELLS WHICH THERE ARE WAY TO MANY OF IN YOUR BLOOD WHILE UNDER A DISCOID ATTACK AND ALSO SOME RED BLOOD CELLS THAT IT HAS KILLED AND ARE JUST LAYING UNDER THE SKIN IN THE LEASION;S AND TOGETHER PUTS OUT THESE SPIKES OR SPLINTER'S MADE OF THE IRON AND DEAD BLOOD CELLS.

THEY COME UP AT WILL AND MUST BREAK THROUGH THE SKIN FOR RELEIF...... AND THERE MAY BE A HUNDRED OF THEM IN ONE FINGER AT A TIME.....
THIS IS SO PAINFULL YOU CAN NOT HOLD A PEN.

AT THIS POINT YOU MUST GO TO A DERMATOLOGIST WHO KNOWS ABOUT DISCOID LUPUS AND HE WILL TAKE BIOPSIES TO ENSURE WHAT IT IS AND THEN HE MUST BREAK THE SKIN AT EACH LEASION AND KEEP IT FROM HEALING UP AS IF IT DOES BEFORE YOU GET ALL THE SPLINTERS OUT YOU WILL HAVE TO BREAK IT OPEN AGAIN AND AGAIN UNTIL THE LUPUS HAS RUN IT'S COURSE.....

NOTHING AND I MEAN NO CREAMS NO MEDS NOTHING AT ALL CAN MAKE IT STOP IT MUST RUN IT'S FULL COURSE UNTIL IT ALLOWS YOUR HANDS OR WHERE EVER THEY ARE COMING OUT OF TO GO THE FULL ROUTE.

EVEN THEN ONCE YOUR HANDS DO HEAL THE SKIN IS ALL SCARE TISSUE AND VERY THIN SKIN TENDS TO BREAK EASIER AGAIN.
REMEMEBER YOUR FINGERS HAVE HUNDREDS OF NERVE ENDINGS IN THEM AND THAT CAUSES SEVERE PAIN AND POSSIBLE NERVE DAMAGE LEAVING YOU WITH CONSTANT PAIN IN YOUR HANDS EVEN AFTER THEY HAVE HEALED.

IT CAN ALSO RETURN AT WILL....STRESS WILL ALSO BRING IT OUT.

THIS IS SO PAINFULL I CAN;T TELL YA HOW BAD IT CAN HURT.
YOU CAN;T WASH YOUR HANDS WITHOUT WENCING IN PAIN NOR HOLD A FORK OR PEN OR YOUR SPOUSE'S HAND.

I AM IN THE MIDDLE OF A DISCOID BREAK OUT RIGHT NOW AND IT HAS BEEN OVER 6 MONTHS RUNNING IT'S LIFE TERM OUT ,
THE PAIN IS TREMENDOUS
BUT EVEN WORSE AS A PROFESSIONAL GUITAR PLAYER I HAVE BEEN FORCED TO CANCEL AND PLAYING AND CAN;T EVEN PRACTICE.
I ALSO HAD TO CANCEL RECORDING MY 4TH ALBUM NOW FOR MORE THAN 6 MONTHS.

SO I AM SORRY IF I BURST YOUR BUBBLE AS I KNOW HOW IMPORTANT IT IS TO TRY TO KEEP A NORMAL LIFE WITH THIS DISEASE BUT IF YOU DO HAVE AN UNDERLYING CASE OF DISCOID LUPUS AND YOU HAVE YET TO LET IT OUT.....do ya really want to????
ALL IT TAKES IS THE ONE TIME TO WAKE IT UP AND YOU HAVE IT FOREVER ...... :shock: :shock: :shock: :shock: :twisted:

SO PLEASE DO YOURSELF A FAVOR AND BEFORE YOU GO AND YOU DO KNOW THAT EVEN SLE LUPUS DOES NOT FARE WELL IN THE SUNLIGHT
PLEASE GO TO YOUR DOCTOR AND GET SOMETHING SPECIAL AND ASK HIM TO CHECK FOR ANYTHING THAT RESEMBLES DISCOID LUPUS
A GOOD DERMATOLOGIST WILL ALSO BE UP ON THIS.

SO I FOR ONE CAN NOT UNDERSTAND WHY YOU WOULD WANT TO GO AND PAY TOP DOLLAR WHERE THE SUN IS THE BIGGEST ATTRACTION KNOWING IT WILL MAKE YOUR PRESENT CONDITION WORSE AND MAY BRING OUT A NEW ONE THAT YOU WILL WISH YOU NEVER LET THAT CAT OUT OF THE BAG !!!!

BUT I CAN ALSO UNDERSTAND THE NEED FOR SOME NORMALLCY IN YOUR LIFE.....SO IF YA REALLY WANT TO GO PLEASE GO SEE THAT DOC FIRST !!!

IF YA HAVE ANY QUESTIONS ABOUT THIS FEEL FREE TO PM ME AND I WILL ANSWER ANY AND ALL QUESTIONS YOU MAY HAVE.

I AM SORRY IF I SCARED YOU...BUT THAT WAS MY INTENTION.
DISCOID LUPUS IS TERRIBLE AND UN-TREATABLE, PAINFULL , UGLY AND FOR A WOMAN IT CAN BE DEVISTATING IF THE BREAK OUTS ARE ON YOUR FACE AND NECK....
THE HANDS ARE BAD ENOUGH..
YA CAN;T WEAR GLOVES ALL THE TIME !!!

I HOPE THIS HELPS YOU AND ANY OTHER'S THINKING OF SPENDING A BUNCH OF TIME IN THE SUN !!!!!

SORRY FOR BEING A DOWNER ON THIS TOPIC BUT I AM JUST TRYING TO KEEP YOU FROM DEALING WITH THIS PAINFULL SIDE OF LUPUS !!!

BEST REGARDS,
StJames 8)

Numpty
02-21-2008, 04:28 AM
I have the most horrible rash on my face which started after a day's 'sun exposure'. My boyfriend lives in Wyoming and I was there in the height of summer last year and my face was actually better there than it is in the dreich (read as rainy, foggy, cloudly, cold, windy and any other horrible weather condition you can imagine) weather we have here in Scotland.

If you can't do sun, I suggest a visit to Scotland where our gardens are at least well watered!

Let us know where you end up going and make sure you have lots of fun wherever that place is!

Claire
x

stjames13
02-21-2008, 07:06 AM
NUMPTY,
Could that rash on your face be ROSACIA?????

Look it up at www.webmd.com and see if what ya read matches your symptoms.

It is known as the BUTTERFLY RASH and the weather and other conditions you experience there may have brought it to life.

hope that helps ya

StJames 8)

flyaway
02-23-2008, 02:15 AM
Hi stjames13,
Thx you for your advice. After read your replied, it really scare me. Its seem doesn't help although i cover up all my skin. :cry: I am actually plan to go beach but the journey to the desination is by boat which maybe sun exposure at this time. I'm so worry and i dont want to be painful after that. Therefore, the topic bring it up.. :( :(

mnjodette
02-23-2008, 06:09 AM
Thanks for the advice, James. I DO appreciate your perspective. I'm still making my trip to Hawaii, but we'll spend a fair amount of the time on the East side of the big island where they get over 200 inches of rain a year - it's often cloudy. My husband will do some snorkeling - I'll find a shady spot to read. The warmth will do me good - and I've never been extremely sun sensitive, as many are. (Knock on wood...or my head...!)

Jody