Cruising with Lupus Photosentivity

I was recently diagnosed with Discoid Lupus, which affects the skin. I'm told that the lupus makes me extremely photosensitive and that consequently I need to avoid the sun, wearing sunscreen along with long sleeves, long pants, a hat, and even gloves when out in the sun even for a couple of minutes.

I have a cruise booked next week (and two others next year). Although it's November, the temps on the Mexican Riviera cruise are going to be pretty warm, so being all covered up may be uncomfortably warm (not to mention the strange looks I'll probably get). I do tend to cruise solo (lost my husband 6 years ago), but generally make friends on board as I'm not shy. I'm just hoping that being completely covered up won't make me feel too strange and "out of place" since many people will be in shorts and t-shirts.

I'm determined not to give up cruising. I have enough of a lifestyle change without giving up cruising (the one vacation I love so much). I know to avoid going out between 10:00am and 4:00pm when the sun's rays are the strongest, and I know that I shouldn't sit near windows, and that florescent lights also give out harmful UV rays (so sunscreen even when inside). Not sure how to handle excursions, but since I've been on this cruise many times, there isn't anything that I really have to do/see, so I may just stay on board, or just venture out for a very short while (covered up of course).

Since this is my first cruise dealing with photosensitivity, I'd appreciate any advice from those who have cruised with lupus/photosensitivity. What do you do on a day-to-day basis? Do you ever wear short-sleeves or a skirt (inside maybe or to dinner)? How have you managed on excursions (while I may not go on this cruise, I would like to go on excursions on future cruises)? Do you ever tell anyone why you're all covered up?

Any help/advice would be appreciated.

I don't share your problem, but I have seen very lightweight clothing at sporting goods stores that claim to block out the sun's rays. You can probably find them on Amazon or other online sites as well.

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Do a GOOGLE search using the phrase "Sun Protective Clothing" as there are many marketers of such clothing.

I don't share your problem, but I have seen very lightweight clothing at sporting goods stores that claim to block out the sun's rays. You can probably find them on Amazon or other online sites as well.

 

 

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Do a GOOGLE search using the phrase "Sun Protective Clothing" as there are many marketers of such clothing.

Thanks. I do have several UV protective hats and gloves, and have treated all my clothes with SunGuard (a laundry additive that washes in UV protectant--learned about it on a Lupus Forum). Unfortunately, I am very short and none of the clothes I've found on either Amazon or other websites (such as Coolibar) carry petite clothing. I'm hoping the SunGuard actually does what it's supposed to. I know I'll get some strange looks (since I get them here just going to the grocery store--actually had two women point and laugh at me), and guess I'll just have to ignore and put up with it.

I'm hoping that anyone that's had to deal with this and still goes on cruises has some tips on how they manage with excursions and other activities on the ship. I suppose I could always sleep in the afternoons and stay up much later at night (starting to feel like a vampire afraid of the sun).

But hey, I'm still going on a cruise.

L.L. Bean and Travelsmith both carry petite sun protective clothing.

L.L. Bean and Travelsmith both carry petite sun protective clothing.

Thanks, I'll have to check them out. Since my arms are so short, it's hard to find long sleeved shirts that fit. I do have a few shirts as well as lots of turtlenecks which are all close-weave, and treated with SunGuard, so I should be fine with clothes. Just need to adjust and deal with what I can and can't do. Sitting outside and watching the sea will have to wait till nighttime I guess and lounging by the pool is out too (at least you know I won't be one of the lounge hogs...lol).

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I don't have lupus but I have extremely fair skin - I burn when someone says the word "sun" around me. lol I pick up long-sleeved loose-weave cotton gauze shirts when I can find them, as they give me some sun protection but the gaps between threads still allow for plenty of air circulation so I don't look "bundled up." I am NOT sure whether that would be adequate protection for your situation, discuss it with your health care provider if it is an option you would like to investigate. (If you can't find suitable gauze clothing, do you sew or do you have a friend who does?)

How awful that someone would be so tacky as to laugh at another person's dress. Unfortunately, there are a lot of jerks in the world.

I you cannot find a shirt with long sleeves that are not too long for you, you might contact a dry cleaner in your area as they sometimes do alterations. I often have to shorten pants but that is easy for me. If you can't shorten pants, you can probably find a friend or professional to do it.

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I don't have lupus but I have extremely fair skin - I burn when someone says the word "sun" around me. lol I pick up long-sleeved loose-weave cotton gauze shirts when I can find them, as they give me some sun protection but the gaps between threads still allow for plenty of air circulation so I don't look "bundled up." I am NOT sure whether that would be adequate protection for your situation, discuss it with your health care provider if it is an option you would like to investigate. (If you can't find suitable gauze clothing, do you sew or do you have a friend who does?)

 

How awful that someone would be so tacky as to laugh at another person's dress. Unfortunately, there are a lot of jerks in the world.

Loose weave isn't protective enough, and tight weave is a little warm, but necessary, so I deal with it.

Yes, there are insensitive people, but I understand that it isn't "normal" to see someone covered head to toe including gloves in August. I can handle the long sleeves, and even the hat, but having to wear gloves makes me very self-conscious and not want to go anywhere, but I'm determined that I don't want to give up cruising. I'm hoping that after the first couple of days, people who see me all covered up will get used to it and stop staring. The people I work with are now used to it thank goodness, but they've known me for a while and see me every day. Hopefully, most of the cruisers I meet will either ignore how I'm dressed, or will get used to it. (Yikes, I hope I don't scare them into thinking I have something catchy.)

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I you cannot find a shirt with long sleeves that are not too long for you, you might contact a dry cleaner in your area as they sometimes do alterations. I often have to shorten pants but that is easy for me. If you can't shorten pants, you can probably find a friend or professional to do it.

 

 

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I usually have to get my clothes altered, even some that are supposed to be petite. I know I have enough for now, and enough for the cruise to stay completely covered up all the time. I just wish I knew enough about the limitations, and maybe how far I can push it since having lupus is new to me.

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Have you spoken with your specialist about Lupus support groups or contacted the Lupus Foundation for groups in your area? I have found that support groups, and foundations are a wealth of knowledge and can assist in your questions. My best friend has Lupus, and was on a cruise with us last year. She does go out in the sun, covered up, for periods of time with no adverse affects (In fact she took 2 tours with us in the Caribbean, just covered up). She also sat in shaded parts of the ship during the day, and had a great time. Each case is different, and you may have different tolerances, so speaking with professionals could be a great benefit. Good Luck!

Have you spoken with your specialist about Lupus support groups or contacted the Lupus Foundation for groups in your area? I have found that support groups, and foundations are a wealth of knowledge and can assist in your questions. My best friend has Lupus, and was on a cruise with us last year. She does go out in the sun, covered up, for periods of time with no adverse affects (In fact she took 2 tours with us in the Caribbean, just covered up). She also sat in shaded parts of the ship during the day, and had a great time. Each case is different, and you may have different tolerances, so speaking with professionals could be a great benefit. Good Luck!

I've joined a lupus foundation on line forum, but no one who responded has been on a cruise. They just say to cover up and avoid going out between 10:00 and 4:00 and plan activities for evening (hard to do when the ship is in port during the day). My dermatologist who is treating the lupus says the same thing. My primary care, who isn't treating the lupus, says to not go overboard and to remember to enjoy living. Thanks for sharing what your friend did--it's nice to know that some one with lupus did go on a cruise and managed to adjust and enjoy it. Would you mind telling me how covered up she was? I'm assuming long sleeves, pants, and hat. Did she wear gloves or carry a sun umbrella, or just slathered on the sunscreen for her hands, face, and other exposed areas?

I'm boarding this weekend, so I guess I'll see how it goes.

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I am curious...What were you doing before your diagnosis? You don't just wake up one day with Lupus...were you noticing sensitivity to sun before the diagnosis? Or are you on some medication that increases the photosensitivity? EM

I've joined a lupus foundation on line forum, but no one who responded has been on a cruise. They just say to cover up and avoid going out between 10:00 and 4:00 and plan activities for evening (hard to do when the ship is in port during the day). My dermatologist who is treating the lupus says the same thing. My primary care, who isn't treating the lupus, says to not go overboard and to remember to enjoy living. Thanks for sharing what your friend did--it's nice to know that some one with lupus did go on a cruise and managed to adjust and enjoy it. Would you mind telling me how covered up she was? I'm assuming long sleeves, pants, and hat. Did she wear gloves or carry a sun umbrella, or just slathered on the sunscreen for her hands, face, and other exposed areas?

 

I'm boarding this weekend, so I guess I'll see how it goes.

 

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She wore long sleeves, lightweight slacks, big floppy hat, sunglasses, and carried an umbrella (oversized). She did not wear gloves, instead used a high SPF sunscreen brand recommended by her physician (I know she got it at CVS Drugstore, but don't know the brand offhand). She has had Lupus for over 15 years, and unfortunately has had to adjust for her body and condition. Just as an aside, don't stop living, just adjust!! Good luck, and have fun! You will just need to be aware of the sun, and plan accordingly, again, shaded areas around ship are your friend...she sat outside under an all shaded area every sea day, and was fine, with lightweight long slacks, and long sleeved shirt and floppy hat, and some folks stared, and even asked, but were very receptive once she explained her condition. Depending on the ship, you still should be able to enjoy fresh air during the day, and still enjoy cruising!

I am curious...What were you doing before your diagnosis? You don't just wake up one day with Lupus...were you noticing sensitivity to sun before the diagnosis? Or are you on some medication that increases the photosensitivity? EM

Back in July, I noticed a spot on my cheek, and went to a dermatologist. They did a biopsy, which was positive for discoid lupus. Discoid lupus is when your autoimmune system attacks the skin and is very sun sensitive. It's actually the UV rays that trigger the immune system to start attacking. I understand it's the mildest form of lupus since it isn't systemic (doesn't attack other organs) and is limited to the skin.

The day before the diagnosis, I was "normal", and the day after was covered in sunscreen wearing long sleeves; by the end of the week, added hats, gloves, and I have a UV umbrella (Amazon loved me). Within a month, had treated all my clothes with Sunguard, which washes in a UV protectant and is good for up to 20 washes. You're right, you don't just wake up one day with lupus, but in my case, it sure seemed that way.

Luckily, we caught it early, so the Discoid lesion is barely noticeable, but sun exposure can cause a flare resulting in more lesions, which are permanently scaring. If I get them on my scalp, it can cause permanent hair loss. Obviously, I don't want to end up bald with permanent scarring, so I'll put up with a few strange looks.

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She wore long sleeves, lightweight slacks, big floppy hat, sunglasses, and carried an umbrella (oversized). She did not wear gloves, instead used a high SPF sunscreen brand recommended by her physician (I know she got it at CVS Drugstore, but don't know the brand offhand). She has had Lupus for over 15 years, and unfortunately has had to adjust for her body and condition. Just as an aside, don't stop living, just adjust!! Good luck, and have fun! You will just need to be aware of the sun, and plan accordingly, again, shaded areas around ship are your friend...she sat outside under an all shaded area every sea day, and was fine, with lightweight long slacks, and long sleeved shirt and floppy hat, and some folks stared, and even asked, but were very receptive once she explained her condition. Depending on the ship, you still should be able to enjoy fresh air during the day, and still enjoy cruising!

Thank you! This is very helpful. I do have high SPF sunscreen. There were a few recommended by my dr, one was 60 SPF and the other is 100 SPF. CVS and Amazon are one of the few places that carry them, especially now that it's November. Florescent lights also put out UV rays, although not as mhch as the sun, so I'm wearing sunscreen indoors too. I've replaced all the lights in my house with the old incandescent, which are hard to find. Since the ship probably has florescent lights, I'll need to wear sunscren indoors, but have been told by my dr that I shouldn't need to cover up completely inside as long as I'm wearing sunscreen to block the milder UV rays from the lights and I'm not sitting right by a window.

I'm hoping that constantly putting sunscreen on my hands will allow me to forego the gloves, as that really causes the stares.

Thanks for letting me know what your friend did. I definitely want to keep cruising as that is the one vacation I look forward to, and feel it is the easiest to do solo.

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Just a caveat - there are different types of lupus and just because one person with "lupus" was able to cruise with minimal coverup doesn't mean the OP can. As someone else said, she needs to discuss it with her health care provider.

> hard to do when the ship is in port during the day

Won't help you this weekend ;) but look into Alaska cruises. We are sailing next spring and 2 of the 4 port days include evenings.

Also, I just bought an enormous sun hat at Amazon (for myself to take on our upcoming cruise!) It is cotton so should probably be treatable with your UV protectant (although it claims to already have UV protection and is offered by several sellers, none of whom speak very good English lol). Search for "wide brim cotton sun bucket hat" if it sounds like something you would like to check out.

Just a caveat - there are different types of lupus and just because one person with "lupus" was able to cruise with minimal coverup doesn't mean the OP can. As someone else said, she needs to discuss it with her health care provider.

 

> hard to do when the ship is in port during the day

 

Won't help you this weekend ;) but look into Alaska cruises. We are sailing next spring and 2 of the 4 port days include evenings.

 

Also, I just bought an enormous sun hat at Amazon (for myself to take on our upcoming cruise!) It is cotton so should probably be treatable with your UV protectant (although it claims to already have UV protection and is offered by several sellers, none of whom speak very good English lol). Search for "wide brim cotton sun bucket hat" if it sounds like something you would like to check out.

You're right that everyone is different with lupus. I have discussed it with my primary care doctor, my dermatologist, and my rheumatologist. Dermatologist said she would prefer that I not to go outside at all during the day ever for the rest of my life, but understands that's not feasible, so if I absolutely have to go outside during the day, then use sunscreen, cover up completely including gloves, hat, and she would prefer a face scarf so nothing is showing--then said that none of her patients do that so do what I feel is right; rheumatologist said to not go overboard, just make sure that I wear sunscreen, long sleeves, and a hat--she doesn't think the gloves are necessary as long as I wear sunscreen; primary care said not to go overboard, cover up as they ask, but still continue to live your life.

I've done the Alaska cruise twice and my brother lives in Anchorage, so I've been there before. I do plan to do another Alaska cruise sometime as a one-way trip and combine it with a visit to my brother, but next's year's cruises are already booked.

I currently have 7 different hats (all wide-brimmed and UV protectant) and several pairs of UV gloves so I have color and style choices. Won't be bringing them all or I'm going to need a bigger suitcase :eek:. As I said in a previous post, Amazon loves me since I've been doing quite a bit of shopping. I figure if I've got to put up with this, then I can at least get a few things that might make it bearable. I even bought some maxi skirts--with a long skirt, long-sleeved blouse, gloves, a hat and yes, even a UV parasol, I feel like something from Gone with the Wind.

Could look for itins that overnight in port. Princess does so in Cabo, IIRC tenders run til 11pm.

Look for Puerto Vallarta overnights. No more on the Miracle but Splendor should be having some.

Could look for itins that overnight in port. Princess does so in Cabo, IIRC tenders run til 11pm.

Look for Puerto Vallarta overnights. No more on the Miracle but Splendor should be having some.

May have to do that at some point. For now, I have the Mexican Riviera booked (leaving tomorrow..yay), the Panama Canal in May, and a circle Japan cruise next October. These were all booked before I was diagnosed. Hoping this cruise goes well and I find I can adjust enough to enjoy it so I don't have to consider cancelling. The Panama Canal one is a bit of a concern since it's closer to the equator (higher UV levels), and it'll be hot, so may consider cancelling that one (and I've already done it once before, but still hate to give it up). For future cruises, may need to consider going to cooler climates during cooler months. The Oct Japan cruise should be OK--keeping fingers crossed.

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>then said that none of her patients do that

At least she is honest! lol

> my brother lives in Anchorage

Very convenient!

> I currently have 7 different hats (all wide-brimmed and UV protectant)

That's me, teaching my grandmother to suck eggs. lol

> Won't be bringing them all or I'm going to need a bigger suitcase :eek:.

I need one with a pocket into the 4th dimension!

> with a long skirt, long-sleeved blouse, gloves, a hat and yes, even a UV parasol, I feel like something from Gone with the Wind.

Pictures! We want pictures!

> The Panama Canal one is a bit of a concern since it's closer to the equator (higher UV levels),

Actually, that should probably be a concern on any cruise, depending on time of year. There must be a website that gives average UV levels for different areas by month. Knowing that our UV levels here in Wyoming go through the roof in May-July, I would expect high UV levels in Alaska about that time as well and high UV levels in the equatorial areas around spring and fall equinoxes (equinoces?) as that is when the sun would be directly overhead. But see what the weather experts say (which I am not).

 

> The Panama Canal one is a bit of a concern since it's closer to the equator (higher UV levels),

 

Actually, that should probably be a concern on any cruise, depending on time of year. There must be a website that gives average UV levels for different areas by month. Knowing that our UV levels here in Wyoming go through the roof in May-July, I would expect high UV levels in Alaska about that time as well and high UV levels in the equatorial areas around spring and fall equinoxes (equinoces?) as that is when the sun would be directly overhead. But see what the weather experts say (which I am not).

There is a web, and even an app that provides UV levels on an hourly basis, but I've been told by my dermatologist not to depend on it (of course, she's the one that doesn't want me to go outside at all during daylight hours). The Lupus boards people tell me that UV levels nearer the poles can be higher due to less ozone layer to deflect them, so moving to Alaska is out (not to mention I really don't like snow).

> UV levels nearer the poles can be higher due to less ozone layer to deflect them

We have a similar problem in Wyoming, the ozone layer is thinner not because of being near the poles but due to elevation - our house is at about 6200 feet, so there is that much less atmosphere to protect us from UV rays. My son got sloppy with the sunscreen on a fishing trip once and wound up with sun poisoning, and he doesn't have any special sensitivity to sun! I wouldn't wish that on anyone!

I realize that you have already gone on your cruise but I wanted to give you some encouragement not to give up cruising.

I have never been diagnosed with Lupus or the dermatological version you have; but I have severe RA and am extremely photo sensitive and have been for more than 10 years and have cruised 4 times since and am cruising later this spring.

I take a few steps which have helped ensure wonderful and memorable trips without making me feel left out.

1. I look for ships with lots of open air but shaded deck areas. This means I can spend hours enjoying the breeze, the sea air and lounge chairs. After my cruise aboard the Star Princess, I no longer over look this, as there were no longer chairs in any shaded area.

2. I wear SPF 110...the next best thing to staying indoors...lol...reapply often...

3. Choose breezy cottons. I usually wear a open Cardigan anywhere I go and opt for maxi skirts instead of pants

4. Wear a wide brimmed hat at all times when you are in the sun.

5. Try to choose excursions with covered transportation...the 4x4 or Jeep ones are not a good idea...same for snorkle etc....

6. if you go to a beach...rent an umbrella...be prepared to move to chase shade as the day goes on...

7. If wandering in ports...go indoors when ever possible...even if it's just to get a break from the sun...I'll duck in a store and browse to let my body cool down...

8. Don't forget your feet ... if in sandals...they are exposed...so keep this in mind.

9. Use a pretty umbrella to shade you when in port.

10. Don't over do it...go out in the early AM ...but head back over lunch to take a break.

11. I also always pack Benadryl spray and aloe gel ... and anything else you can use to ease the painful blisters....

12. Wear a long sleeve rash guard for water sports or the beach...they make them as one piece too...covering your neck, to your wrists and to your ankles.

13. Have fun! While it may sound like a drag to cover up...it doesn't have to be...own it and don't define your trip by you lupus.

I hope you continue to cruise for years to come!

I realize that you have already gone on your cruise but I wanted to give you some encouragement not to give up cruising.

 

I have never been diagnosed with Lupus or the dermatological version you have; but I have severe RA and am extremely photo sensitive and have been for more than 10 years and have cruised 4 times since and am cruising later this spring.

 

I take a few steps which have helped ensure wonderful and memorable trips without making me feel left out.

 

1. I look for ships with lots of open air but shaded deck areas. This means I can spend hours enjoying the breeze, the sea air and lounge chairs. After my cruise aboard the Star Princess, I no longer over look this, as there were no longer chairs in any shaded area.

 

2. I wear SPF 110...the next best thing to staying indoors...lol...reapply often...

 

3. Choose breezy cottons. I usually wear a open Cardigan anywhere I go and opt for maxi skirts instead of pants

 

4. Wear a wide brimmed hat at all times when you are in the sun.

 

5. Try to choose excursions with covered transportation...the 4x4 or Jeep ones are not a good idea...same for snorkle etc....

 

6. if you go to a beach...rent an umbrella...be prepared to move to chase shade as the day goes on...

 

7. If wandering in ports...go indoors when ever possible...even if it's just to get a break from the sun...I'll duck in a store and browse to let my body cool down...

 

8. Don't forget your feet ... if in sandals...they are exposed...so keep this in mind.

 

9. Use a pretty umbrella to shade you when in port.

 

10. Don't over do it...go out in the early AM ...but head back over lunch to take a break.

 

11. I also always pack Benadryl spray and aloe gel ... and anything else you can use to ease the painful blisters....

 

12. Wear a long sleeve rash guard for water sports or the beach...they make them as one piece too...covering your neck, to your wrists and to your ankles.

 

13. Have fun! While it may sound like a drag to cover up...it doesn't have to be...own it and don't define your trip by you lupus.

 

 

I hope you continue to cruise for years to come!

Thanks Phoenix. The Mexican Riviera cruise went well and I do plan to continue cruising. I did cancel the Panama Canal cruise primarily because I wanted to spend more time pre and post cruise in Japan and don't have enough vacation with the Panama Canal cruise being so long (so not entirely because of the higher UV levels there, although avoiding that is probably a good idea).

Your advice on how to handle the photo-sensitivity is much appreciated--thanks again.