[TrishaSLE]

Hi! My name is Trisha and I am brand new to this site. I have been diagnosed with Lupus for about a year and a half and been in a constant flare up for about 2 years. I'm only 21 but my boyfriend and I have been together for 3 years now and are discussing marriage. We have been ring shopping and dabbling in wedding ideas. Anyway, I was wondering about a few things like the honeymoon... where did you guys go and what did you do? Did you mostly stay indoors? My skin rash in pretty severe but what does staying out of the sun and heat (and cold) really mean? Can I go to the beach and stay under a tent? Should I not even honeymoon to a tropical location? My whole life is turned upside down and although it has been a year and a half since I've known of my disease-- I still do not know what the limits are. Any help??


Thank you!!
-Trisha

 

[Coastiewife]

Hi trisha,

Welcome to the site, and congrats on the marriage plans. If you are photosensative you should take precautions if you are planning to go somewhere sunny. Not everyone with SLE has a reaction to the sun. I went many years with out it, recently that has changed, so if you do not react now, it may change in the furture but I don't think you should limit your plans because of your dx, just be careful and plan accordingly.

 

[Maia]

I don't think you have to eliminate any particular spot as a possibility right now. I am assuming your rashes are from the sun and you are quite photosensitive? Are you on Plaquenil? You can also ask for mepacrine/quinacrine and take that in combination to see if that can get your lupus rashes under better control. We have a few that are on that combination and have found it very effective.

If you do your best to stay inside during peak sun hours (10-4), and wear strong sunscreen, light weight long sleeved shirts, wide brimmed hat and sunglasses, etc.etc.etc.... then I would like to think it is possible for you to go anywhere But you are probably a better judge of what will and won't work for you as you know how you react to the sunlight you presently get.

Being in the shade does help, but UV rays will still get to you especially if they are being reflected off the water/ocean if it's nearby. I wonder if anyone else has any really great honeymoon ideas for the sun sensitive? I'm drawing a blank right now myself but maybe others will come along with some great ideas!

Good luck and congrats on your upcoming wedding

 

[melissar]

Las Vegas baby! You can do anything at night that you can do during the day in terms of swimming and hanging out by the pool, and during the day when it's hot, you can be inside doing things. There is a lot more to Vegas then gambling - shows, bowling, movies, site seeing, indoor amusement parks, food of all kinds, laser tag and the list goes on and on. That whole town knows how to spoil newly wed couples because weddings are such a huge part of the industry down there. Each one of the hotels is so different that you could walk around for DAYS and not see everything.

Also, beyond the strip hotels, there's the downtown hotels and the Freemont street experience. Don't forget the places where the locals go too.

Congrats on your wedding!! Live it up girl!

 

[lazylegs]

Welcome to the site Trisha.

You can manage a tropical location if you take precautions and can handle the heat. I have gone to the beach and lounged under a tent and done ok. I still wear sunscreen and a long lightweight coverup due to the reflection off the sand, water or cement outside the tent. I find it much more enjoyable though to go out in the early morning for a stroll along the beach, take a nap in the afternoon, then enjoy the nightlife in the evening.

The other key is to stay hydrated. Alcohol and I don't get along but there are so many non alcoholic concoctions you can try. You will feel totally pampered being waited on and sipping your drinks with the little umbrellas.

Since I have problems with heat I take a spray bottle with water when I go out. You can even get the ones that have a little fan. Some resorts even provide misters and fans in the tents.

Take care,
Lazylegs

 

[debatat]

Hi Trisha, just wanted to say congrats on your wedding. The others have given excellent tips.

Deb

 

[onetay]

Hi Trisha and welcome the site. Congrads on your plans. If you are sensitive to the sun, heat, and cold than that would take some planning for mostly indoor things I would say. I spend a lot of time inside. In the summer months the heat and sun are very bad (sun screen has not even helped). In the winter I have to stay out of the cold or it is the joint pain that will kill me (You are most likely the same way). There are nice places you can go that don't have sun and fun in the same sentence.

I hope that you are feeling well and doing well.

 

[KarolH]

Hi Trisha and welcome to the boards.

Congratulations on your wedding and I hope plans go smoothly.

You have been given great advice here from the other folks.

Join us in the chat room sometime.:wink2:

 

[keebler]

Hi Trisha.

Welcome to the lupus site.

I think you can go anywhere you want to for a honeymoon.
Careful planning is the key. We can do anything we want as long as you plan.

Congrats on your wedding.

Take care,
Lyn

 

[lin]

Hi trisha, welcome, and congratas to xx