Cruising with Lupus Photosentivity

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.

Hi Bassett Mom, Just wanted to add my two cents to Phoenix_13's comments. I was diagnosed with lupus in the mid-1970's when the outcomes were significantly more dire than they are now. I had both the photosensitivity (first flare followed a week vacation in Jamaica!) and systemic lupus with organ involvement. Like you I was already an adult when diagnosed and a lifelong beach lover and cruise lover. So I learned very quickly to adapt and adjust. I admit to pushing the envelope but each lupus patient needs to learn what the limits are for their own disease. It is different for each of us. I don't know you or your specific case but after working with dozens of patients over the past 40+ years through support groups and phone lines, I would guess that your dermatologist is being over protective and you need to find out what works for you. Cruising is actually pretty easy because one can usually find shaded decks on one side of the ship or other. And big panoramic windows are featured on all ships these days. All the other stuff is obvious cover up as much as possible, avoid peak hours and ALWAYS have your sunscreen at the ready. I wanted to write because I wanted to say how important it is to end a way to live the life you want with the cards you are dealt. I was not supposed to make it to 40 and I just had my 70th birthday, getting ready for my 31st cruise and spend most winters in Hawaii. You will figure out what you need to do, and then get on with it. Good luck, Bill

Lands end sells cute UV protective clothing they also come in petite sizes. I own a coverup and a long sleeve tshirt from them. I love mine!

https://www.landsend.com/products/womens-lace-up-swim-cover-up-dress/id_305662?sku_0=::2UJ

https://www.landsend.com/products/womens-long-sleeve-swim-tee-rash-guard/id_305569?sku_0=::2UP

Hi Bassett Mom, Just wanted to add my two cents to Phoenix_13's comments. I was diagnosed with lupus in the mid-1970's when the outcomes were significantly more dire than they are now. I had both the photosensitivity (first flare followed a week vacation in Jamaica!) and systemic lupus with organ involvement. Like you I was already an adult when diagnosed and a lifelong beach lover and cruise lover. So I learned very quickly to adapt and adjust. I admit to pushing the envelope but each lupus patient needs to learn what the limits are for their own disease. It is different for each of us. I don't know you or your specific case but after working with dozens of patients over the past 40+ years through support groups and phone lines, I would guess that your dermatologist is being over protective and you need to find out what works for you. Cruising is actually pretty easy because one can usually find shaded decks on one side of the ship or other. And big panoramic windows are featured on all ships these days. All the other stuff is obvious cover up as much as possible, avoid peak hours and ALWAYS have your sunscreen at the ready. I wanted to write because I wanted to say how important it is to end a way to live the life you want with the cards you are dealt. I was not supposed to make it to 40 and I just had my 70th birthday, getting ready for my 31st cruise and spend most winters in Hawaii. You will figure out what you need to do, and then get on with it. Good luck, Bill

Thanks for the encouragement Bill. It's been a year since I was diagnosed and I am finding what I can and can't do. You're right that my dermatologist was being overly cautions (I'd say extreme since she insisted that I not go outside at all during daylight and to emphasize the point, would show me the disfiguring pictures of discoid lupus and tell me that's what I would look like if I went outside). I've since found a different dermatologist, and he is much more realistic and said I still need to live my life and not shut myself away. His advice is consistent with your advice and others--wear sunscreen, long-sleeves, and avoid the mid-day sun. Otherwise, do what I enjoy doing. I've since ditched the gloves unless I'm going to be out for a long time, and instead keep adding sunscreen to my hands and other exposed areas. I do tend to spend more time inside on a day-to-day basis. I've given up yard work as I didn't enjoy it and can't see spending time outside doing something I didn't like, so I hired a gardener. Instead, of working in the yard, I'd rather be inside doing things like researching and planning for my next cruise ;). Going to on a Circle Japan cruise next month and can't wait!

Would carrying an umbrella help? I see people using umbrellas in ports.

Would carrying an umbrella help? I see people using umbrellas in ports.

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I have Systemic Lupus, but I am sun sensitive. I also have RA, Neurofibromatosis, Type I, and kidney involvement due to the Lupus as well as several other conditions. Due to the RA and degenerative disc disease, I now have very limited mobility and use a scooter for anything over 20 feet. My dermatologist said that as long as it was treated AND I was wearing sunscreen, loose weave was okay. She also said that it was okay to be in the shade. I do short tours, am never without my SPF 50 hat (that does a good job shading my face and neck, and wear long sleeves and slacks. I don't wear gloves, but do make sure to have sunscreen on my hands (and keep reapplying it as it does lose effectiveness.)

I also get the butterfly rash across my cheeks and nose (especially in times of stress.) My co-workers could tell when I was having a stressful day just by looking at my face! (I used to teach in public school.) I was diagnosed 50 years ago, so I've been dealing with this for a long time. Feel free to ask any questions you have.

I just wanted to chime in with this: if you are petite, check out children's swim suit section at your local stores. You can find what you are looking for in your local walmart. A boys/girls size 12-14 may be a good fit for a petite person.

I have a son with red hair and snow white skin (although he doesn't really have freckles like a true redhead), and I get long sleeve rashguard shirts for him, plus BananaBoat SPF100.

I have Systemic Lupus, but I am sun sensitive. I also have RA, Neurofibromatosis, Type I, and kidney involvement due to the Lupus as well as several other conditions. Due to the RA and degenerative disc disease, I now have very limited mobility and use a scooter for anything over 20 feet. My dermatologist said that as long as it was treated AND I was wearing sunscreen, loose weave was okay. She also said that it was okay to be in the shade. I do short tours, am never without my SPF 50 hat (that does a good job shading my face and neck, and wear long sleeves and slacks. I don't wear gloves, but do make sure to have sunscreen on my hands (and keep reapplying it as it does lose effectiveness.)

 

I also get the butterfly rash across my cheeks and nose (especially in times of stress.) My co-workers could tell when I was having a stressful day just by looking at my face! (I used to teach in public school.) I was diagnosed 50 years ago, so I've been dealing with this for a long time. Feel free to ask any questions you have.

Thanks for chiming in with your experience. I have a new dermatologist and have since ditched the gloves and just reapply sunscreen, especially to my hands since that tends to wear off, and get washed off, more often. I have a nice collection of SPF50 hats that help as well. Slowly finding my way and what I can and can't do, and looking forward to my next cruise.

I just wanted to chime in with this: if you are petite, check out children's swim suit section at your local stores. You can find what you are looking for in your local walmart. A boys/girls size 12-14 may be a good fit for a petite person.

 

I have a son with red hair and snow white skin (although he doesn't really have freckles like a true redhead), and I get long sleeve rashguard shirts for him, plus BananaBoat SPF100.

Thanks for the advice, unfortunately, I'm actually very short and not really "petite"--children's clothing doesn't work as I'm much too "hippy" and "busty". I do wear petite clothing, but usually medium or sometimes large petite--I think the word petite for clothes is just a nice way of saying short. ;)