After this long extreme winter we made plans for the Carribean. I was not gung ho about it but husband insisted and needs a huge break from work. I have 50 SPF block and a lot of coverups but yesterday I had errands to run on a sunny Sunday and forgot my sunglasses and boy did I pay. My eyes burned and I felt like a vampire wanting to get away from it. I take 1000 mg of CellCept daily and have SLE. I don’t want hubby to sacrifice his desires for travel. Was wondering how other Lupies deal with this. Does anyone have good results and can recommend a good clothingwear that blocks sun. I have done my research and they seem expensive. Not sure if it’s worth the expense. I would appreciate any other suggestions. Thanks in advance!
I moved to Florida about nine months ago. Despite having to be careful of the sun, I love it. You can enjoy your cruise, without spending too much time in the sun! There are movies and live plays, stand up comedy, clubs, food galore! Enjoy the spa. Invest in good big hat and sunglasses, maybe a long sleeve sun shirt. But don’t go overboard on the SPF clothes. I use a swimsuit cover as a shirt too. I am a cruise junkie. Believe me, a vampire could live fabulously on a cruise!! Have a fantastic time. I am so excited for you.
I am on vacation in flordia. Yesterday I had trouble too I have a long sleeve Columbia shirt, I wore a sun hat too and of course sun block. I was out around noon collecting sea shells. I lasted a whole hour before I got dizzy, and headache. We had to leave and then I slept all evening. This morning my legs hurt. It is so hard, everyone is swimming and laying out. The ocean is so beautiful. This is my life I have no choice but to deal with it. The sun is more entinse where you are be careful you don’t want a major flare. Good luck to you
I was very sick several times last year and had also been in FL about 6 times. I am here now for about 5 mos. I was told I had Lupus just this past Oct. So far, (knock on wood) since I’ve been in FL again, I have been good. As a matter of fact, I feel the best that I’ve felt in probably 3/4 years. The things I have done differently…every time I walk out of the house, I coat up with sunscreen…usually 50 or above. (I need stock in these companies!) I know it’s often said that anything over 30 spf doesn’t matter…but from what I’ve read about Lupus, the higher the better. I also always have/wear a hat with a brim. I hate hats…but this is the new me. And I’d rather look stupid than get sick.(hats of this type are not flattering on me) Now I’m used to it. I have also ordered several items from Coolibar and Sunday Afternoons. The Coolibar clothing is great. All types. I am very active and have their sport type shirts/pants, shorts and swim stuff. I can’t say with any certainty that because of all of this I haven’t been sick since last year…BUT I HAVENT BEEN SICK!!! And I’ve been out in the hot FL sun playing tennis, golf, biking, walking, swimming etc. I haven’t been this active in a few years, and I’m loving it!
Its an additive you wash your normal clothes in and adds the sunscreen protection to them that is in the clothes they sell. Much cheaper to do it yourself. You have to order it on line, unless you live in Florida or California where some Wal-Marts carry it.
I have used Solumbra clothing for years....it is expensive but lasts and lasts, so I feel it's worth the expense. But I live in Florida, and wear them year round.
I saw that Flutter recommended the rit sun guard, I haven't used it myself, but know people that have and are happy with it.
We’ve never cruised before and I am very hesitant with buffet type meals. We actually never go to them. I’ve been avoiding a wide brim hat for a few years but will have to reconsider. The flying always affects my anemia negatively and I can tell my kidney involvement with loss of protein seems to increase for a month or so afterwards. Thanks for the excitement, I need to catch it, lol!
laundrydiva said:
I moved to Florida about nine months ago. Despite having to be careful of the sun, I love it. You can enjoy your cruise, without spending too much time in the sun! There are movies and live plays, stand up comedy, clubs, food galore! Enjoy the spa. Invest in good big hat and sunglasses, maybe a long sleeve sun shirt. But don’t go overboard on the SPF clothes. I use a swimsuit cover as a shirt too. I am a cruise junkie. Believe me, a vampire could live fabulously on a cruise!! Have a fantastic time. I am so excited for you.
I live in CA and have had SLE for over 30 years. In the summer I swim in a rash guard with a high SPF, you can order them on line for fairly inexpensive. I have them in several colors and they go over the top of my swimsuit. I avoid the sun from 10 to 2 as much as possible. Eddie Bauer makes a great sun shirt that has cooling vents that both my husband and I swear by. I’m in the sun alot because of baseball, soccer, and other kid events so I wear neutrogena cooling spray sunblock in the highest SPF available. I’m allergic to chemical blocks on my face so I use a prescription one that’s not waterproof and reapply. I can also use neutrogena’s face block if I’m going swimming. I’m also on cellcept so I try really hard to keep my sun exposure limited. I bought myself a huge straw hat, the brim is like 8 inches from my face and pretend I’m a famous movie star with big sunglasses. For some reason I’m able to wear shorts and the sun doesn’t bother my legs as long as I don’t get burnt. CA’s summer temperatures where I live (foothills between Sacramento and Tahoe) are in the mid 90’s on up so pants are out of the question. Long maxi dresses work great and I have a huge collection of sarongs that I can use as skirts or shawls depending on where I need the coverage. Most resorts have umbrellas you can rent and you can swim in the ocean with a long sleeved rash guard on. They’re supposed to be form fitting so don’t get them too big. Don’t let comments or looks from other people upset you. Out here pale skin is healthy skin. I was 7 when I developed sjogren’s and lupus so I learned the hard way that sunbathing was not for me. I’m also half Irish so the sun has given me a ton of freckles. It’s the heat that wipes me out more than the sun. If you need websites for sunshirts let me know. Rash guards are sold through any of the surfing stores. Billabong, OP, Pacific Sun etc… The sun clothes made for Australia
are the best. If you choose not to wear sun clothes then wear black. It absorbs the sun’s rays better than any other color. There’s a reason the desert tribes wore black robes. White has almost no protection from the sun. I also carry a ziploc baggie with a small washcloth and ice to help keep me cool. There are lots of little tips and tricks I’ve learned over the years. The Carribean is not as hot as it is out here. Just try to pick an island that has stuff to do or take day trips to other islands. Not to scare you but the last time I was there I got sun poisoning and was so badly burned that I was curled into a little ball (I was around 7 or 8, and sunscreen wasn’t as good back then) One of the natives cut open an aloe plant and smeared it all over me. It was the only thing that gave me any relief. This was before it was sold in stores. Sorry this is so long. I hope you have a good time. Gentle hubs, Annemarie
I forgot to mention that I usually wear shorts in hot weather as well. Just use sunscreen. It’s my daily routine. You can also find “sleeves.” (Solar sleeves) if u have a short sleeved shirt on, when you are out in the sun, just put the sleeves on. They are a moisture wicking material and I find they also keep me cool. Then when u go inside or are out of the sun, just whip them off and put in your purse. They sell them online and also in golf and sporting good stores. I also have the “leggings” from when I biked years ago…but that was mainly for warmth on cool mornings before the sun came out…and pre knowledge of lupus. As someone else said, don’t feel uncomfortable with any looks from others. The are more people out there than you think that take precautions. And if not, then set the trend. Too much sun isn’t good for anyone! And several of the comments I’ve red online from many people that got sick, referred to how they wish they took care of themselves better and stayed out of the sun!
The Sunday Afternoons site has that wash in stuff for regular clothing…not sure if the brand is Rit. But I did notice you have to wash your clothes in HOT water.
To me it is simple. I stay out of the sun. I wear only long sleeves and long pants and a big hat, even though I stay out of the sun amap. I am not going to make myself sick. You can have just as much fun indoors on a cruise. Go outside after the sun goes down or on the shady side of the ship.
I have no magic answer for you. Sorry the sun bothers you so much.
This discussion has been about clothes and sunblock so far. There are some great suggestions here. Will try the Rit stuff.
Consider your access to medical care. Last September, I visited relatives in Wash state. The trip was great. My lungs improved from the cool, low-level humidity. Meanwhile, I was in the USA and knew that a doctor and/or hospital could be reached immediately.
When I returned home, all hell broke loose. Herniated disks in my neck were pinching swollen nerves which caused pain and numbness from my shoulders to my fingertips. Easily could have happened on the trip. But I was in the USA where medical care is available immediately.
Check out resources for medical care in the country you all plan to visit.
Hello, when am going to be out in the sun for a long period of time , I wear a white long sleeve shirt ! It help me from the burning feeling on my arms , also have a hat with a visior on it . And try to take breaks in the shade to rest for about 10-20mins . Hope you have fun away on the trip ! Try your best to enjoy …Beverly L.
Hello, when am going to be out in the sun for a long period of time , I wear a white long sleeve shirt ! It help me from the burning feeling on my arms , also have a hat with a visior on it . And try to take breaks in the shade to rest for about 10-20mins . Hope you have fun away on the trip ! Try your best to enjoy …Beverly L.