Lupus

[Nymue]

Does anyone have any family members or know anyone that cruises that has Lupus? I wondering if the condition causes any complications traveling?

 

Thanks,

Anne

[happyscot]

Does anyone have any family members or know anyone that cruises that has Lupus? I wondering if the condition causes any complications traveling?

 

Thanks,

Anne

 

 

My sister has it. She stays out of the sun at all costs. If she has to go in it, she wears about an inch of steroid cream. But this is a serious medical condition that comes in various forms, and varies in severity over time, so there's no one answer, and you ought probably to consult your doctor.

 

Annoyingly, she still looks better than me.............

[negn]

The relaxation should be good for you. Dont forget your meds and use strong sunblock or avoid the sun all together. If you control your exacerbations at home, it shouldnt be any different on a ship

[CruiseDuck]

My niece was recently diagnosed with Central Nervous System Lupus and is currently undergoing chemo treatments at this time. She has to wear a mask when she is in a crowd as her immune system is totally out of whack. So, it really depends on what kind of Lupus and also the current treatment.

 

As already posted she has to stay out of the sun. Clothing with UV protection would also be a good idea to take.

[Nymue]

Does anyone know if wheelchairs are available onboard, or do you need to bring your own just incase it's needed.

 

This is all new to me, I was VERY recently diagnosed :(

 

Anne

[PescadoAmarillo]

Anne-I was diagnosed four years ago. My bloodwork indicated I was extremely high positive for lupus. Of course, we never know what the future may hold, but for now, I still only have the one symptom (Raynauds Syndrome) that started my doctors wondering about it in the first place, and that symptom only causes me trouble with holding frosty frou-frou drinks on a cruise.;) I still do everything I did before I was diagnosed, and still scuba dive on cruises. As others have mentioned, I take a LOT of sunblock on a cruise, but I did that even before lupus, because I use Retin-A. I also take a collapsible sun hat, because I haven't reduced my time in the sun at all. Since I've been diagnosed I've been to China, Australia twice and Europe once. So no changes at all for me in four years. I hope you'll have the same great luck.

[jules79]

my Uncle has it and it just tries to stay out of the sun...if you have b in it just wear VERY VERY GOOD sunscreen.

[Nymue]

Mine is already further advanced, to the points of extreame weakness and fatigue. It has started effecting my lungs. The Raynauds Syndrome was one of the first problems, I've had that for years :confused: however the Lupus was never diagnsosed.

The odd thing is, at least so far (knocking on wood), I haven't had any problem with the sun! I'm a Sun Worshiper, I love to snorkle, I live in the ocean when I can :p

I'm diabetic as well......so we'll see how this all plays out.

For the past 3 years I've had this strange "Rash" on the neck & chest, the doctor said that's the same 'Butterfly Rash' most people get on the face.

 

Anne

 

Anne-I was diagnosed four years ago. My bloodwork indicated I was extremely high positive for lupus. Of course, we never know what the future may hold, but for now, I still only have the one symptom (Raynauds Syndrome) that started my doctors wondering about it in the first place, and that symptom only causes me trouble with holding frosty frou-frou drinks on a cruise.;) I still do everything I did before I was diagnosed, and still scuba dive on cruises. As others have mentioned, I take a LOT of sunblock on a cruise, but I did that even before lupus, because I use Retin-A. I also take a collapsible sun hat, because I haven't reduced my time in the sun at all. Since I've been diagnosed I've been to China, Australia twice and Europe once. So no changes at all for me in four years. I hope you'll have the same great luck.

[My2Kitties]

I say the title "Lupus" and clicked in...I was diagnosed with Lupus after my first cruise...I got some sunburn on my legs that never went away...when I had my physical, they could not get a platlette reading and got upset and sent me to a Hemotologist...needless to say I have been cruising ever since and find it to be the best way to travel since I can enjoy the ocean and the pools on board and still keep out of the sun...we also do excursion that show us the city/island/area we are in and try to use bus/taxi/boat that have shade and air conditioning/heat...my DH will not let me leave the cabin in the morning without my 45+ sunscreen and 30+ with me...I bring bottled water with me to have in my room especially to take meds and I watch my foo foo drinks and my diet...

Nymue, did they tell you not to eat tomatoes and red night shade vegetables? Since I stopped eating the tomatoes I don't get flares as often so before I board I let special services know about the no tomatoes and I see the M'D when I board and the wait staff is wonderfully helpful in my diet...

If the situation were to arise that you can't get somewhere walking you would need to talk to them in advance...so far I have not had a problem with walking...except in Alaska twice the gangplank was so steep I did not know if I could get up (my biggest problem is my lungs-they don't expand as much as they should) but my DH and friends helped me, stopped with me on the way...

If you would like to talk...you are welcome to email me at jdnelson1413 at yahoo dot com

Enjoy your cruise and be careful...

[My2Kitties]

We should start a theme thread on "cruising with Lupus" because there are more and more people being diagnosed with it...

 

I was also way up there in my numbers a few years back but with my diet, exercise and vitamin I am doing really well considering...of course it is hard to type for long periods since my hands go numb so easily...

 

but please not just Anne, anyone that wants to chat let me know at the email above...

[waterbug1]

Hi Nymue,

As you can see, there are a good many of us lupus cruisers out here. Everyone has given you some very good advice. The only thing that I can add is that for me, nothing can trigger a flare more than stress. I think I enjoy cruising so much because I find it so completely relaxing. So far I have been on seven cruises and am leaving on my eighth in two weeks. Like most everyone else has mentioned, I slather on the sunblock. I still participate in outdoor activates. (I too love to snorkel.) Being diagnosed with a chronic illness can be frightening and stressful. It can take a bit of time to get used to living with it. I wish for you and all of us members of the lupus club, many years of much cruising. Cheers!

[Nymue]

So far noone has said anything about diet, and I love tomatoes....I load up on them when ever I can. :(

My lungs have already become a problem, my breathing capacity is down to 60%. The found granulomas in the lungs.

 

Anne ----email on the way.

 

Nymue, did they tell you not to eat tomatoes and red night shade vegetables? Since I stopped eating the tomatoes I don't get flares as often so before I board I let special services know about the no tomatoes and I see the M'D when I board and the wait staff is wonderfully helpful in my diet...

If the situation were to arise that you can't get somewhere walking you would need to talk to them in advance...so far I have not had a problem with walking...except in Alaska twice the gangplank was so steep I did not know if I could get up (my biggest problem is my lungs-they don't expand as much as they should) but my DH and friends helped me, stopped with me on the way...

If you would like to talk...you are welcome to email me at jdnelson1413 at yahoo dot com

Enjoy your cruise and be careful...

[Nymue]

Jeanne,

 

What kind of foods & vitamins do you use? I'm also Diabetic and have Asthma. Diet, herbs & Vitamins have worked WONDERS for me :D

I have a dear friend that is an herbalist and natriopath (sp), she's been a treasure.

 

Anne

 

We should start a theme thread on "cruising with Lupus" because there are more and more people being diagnosed with it...

 

I was also way up there in my numbers a few years back but with my diet, exercise and vitamin I am doing really well considering...of course it is hard to type for long periods since my hands go numb so easily...

 

but please not just Anne, anyone that wants to chat let me know at the email above...

[Nymue]

You have all just been WONDERFUL!!!!!!!!!! I now realive this isn't a scary as I thought this morning.

 

Hugs,

Anne

[Starr Mtn]

Generally wheelchairs are only available for boarding

and disembarking. Also cruise ship wheelchairs are

usually old and very uncomfortable.

 

Suggest you either bring your own - or

rent one which would be delivered to your

cabin and picked up there after your cruise.

[tequilasunrise]

Jeanne,

 

What kind of foods & vitamins do you use? I'm also Diabetic and have Asthma. Diet, herbs & Vitamins have worked WONDERS for me :D

I have a dear friend that is an herbalist and natriopath (sp), she's been a treasure.

 

Anne

 

Anne,

 

I am not surprised you have Asthma in conjunction with what sounds like Lupus pneumonitis, Lupus often attacks what it weak. My advice to you, is cruise now, and cruise often, while you can still tolerate it.

 

Be wise---Don't book any shore excursions in advance, because you don't know from day to day what you can do. Book at the last minute. Book half day excursions and nap after. Do easy on your body activities. Avoid prolonged sun exposure. Use VERY strong sunscreen (60 plus) and combine it with special clothes and hats you can buy that are treated to block sun rays (allowing you to do in the sun things for a bit---I even snorkel in this clothing). These are available on the net and at special outdoor stores. Avoid visiting sulfer type springs and Scuba (Sorry, but protect your lungs).

 

Eat foods that are high in potassium (melons, oranges, bananas, potatoes, dates, leafy green veggies) unless you are on blood thinners. Plan in plenty of sleep and stick to it! Avoid too much alcohol.

 

Because of your diabetes, watch your food intake. Balance your meals and don't skip any, no matter how much fun the excursion is. Remember, Lupus attacks what is weak. Don't get weak where you have control. You didn't say if you were on insulin, but no worries, that can be accomodated too.

 

Above all, ENJOY YOUR LIFE RIGHT NOW. Don't worry about later, enjoy it now! Do what makes you happy and if that's cruising, DO IT!!!! Don't put it off even a few months, book now, go now and have fun with your loved ones!!!

 

I hope you post a happy "I had a great cruise" thread. I look forward to reading it.

[huxlemo]

My mother in law has Lupus and she went on a cruise with us last summer. She was diagnosed years ago. She gets extremely tired easily. She took a nap every afternoon and tried to stay out of the sun. When she did have to be in the sun, she wore a hat and lots of sunscreen. She carried a big water bottle around all the time. From all the medication, she gets a very dry mouth. She found shaded areas on the ship to sit and lay around to relax. When we left the cruise, she was the most relaxed I have ever seen her. She keeps droppng hints that she wants to go on another cruise.

[BaileyandBella]

I have Lupus too. I was DX'ed 5 years ago at age 35.

 

I just wanted to offer (((((((((HUGS)))))))).

 

There is a wonderful board with this type of format for Lupus. Here is the link. http://www.thelupussite.com/forum/

[My2Kitties]

Hi Nymue,

As you can see, there are a good many of us lupus cruisers out here. Everyone has given you some very good advice. The only thing that I can add is that for me, nothing can trigger a flare more than stress. I think I enjoy cruising so much because I find it so completely relaxing. So far I have been on seven cruises and am leaving on my eighth in two weeks. Like most everyone else has mentioned, I slather on the sunblock. I still participate in outdoor activates. (I too love to snorkel.) Being diagnosed with a chronic illness can be frightening and stressful. It can take a bit of time to get used to living with it. I wish for you and all of us members of the lupus club, many years of much cruising. Cheers!

 

I agree fully...when I am on a cruise I am healthier than ever...

[My2Kitties]

I have Lupus too. I was DX'ed 5 years ago at age 35.

 

I just wanted to offer (((((((((HUGS)))))))).

 

There is a wonderful board with this type of format for Lupus. Here is the link. http://www.thelupussite.com/forum/

 

I went to the site and it is wonderful...thank you so much for sharing...I can't believe the support and info...

(((((((((HUGS)))))))) back at you!

[tinlizzy]

You have all just been WONDERFUL!!!!!!!!!! I now realive this isn't a scary as I thought this morning.

 

Hugs,

Anne

 

((HUG)) No worries Anne. you are the same person you were yesterday only now you have a dx and help! People ask me how I could take the dx so well and I say that if I were to obsess over it and think about it all the time I might get hit by a car crossing the street if my mind were elsewhere.

 

I too, have traveled to Hawaii, NYC 3x, China, Japan, Europe and taken 4 cruises since I was diagnosed 6 yrs. ago.

 

Only tip I would add for cruising is always have an umbrella in your purse. Waiting in line (in full sun) to get back on the ship got me once and I paid for it with a nasty rash on formal night :( and a general ill feeling for the remainder of the day.

[My2Kitties]

Jeanne,

 

What kind of foods & vitamins do you use? I'm also Diabetic and have Asthma. Diet, herbs & Vitamins have worked WONDERS for me :D

I have a dear friend that is an herbalist and natriopath (sp), she's been a treasure.

 

Anne

 

Anne,

Right now I am only taking a multi vitamin and zinc/c to keep from getting a cold...I was taking Immune 26 which is an egg protein but not sure I have respect for the company that makes it...over the last 8 years I have tried several different vitamin/herbs with many companies and I am finding that eating right, low stress, exercise and rest is good right now but I do try to bake and cook healthier more than not and I pick and choose what I order out more carefully than I did before...I try to avoid as many chemicals as possible...

one more thing...I sleep with a CPAP machine so I keep all my meds in there so they are all together and it stays with me while travelling...and make sure you take anything you could possibly need...remember there may not be a place to get meds...I take a Medrol Pack everywhere...if I get really sick that is something I would need...but knock on wood I haven't had to use it yet on a cruise...

there is also a thread on diabetics travelling with insulin here also...

[My2Kitties]

Be wise---Don't book any shore excursions in advance, because you don't know from day to day what you can do. Book at the last minute. Book half day excursions and nap after. Do easy on your body activities. Avoid prolonged sun exposure. Use VERY strong sunscreen (60 plus) and combine it with special clothes and hats you can buy that are treated to block sun rays (allowing you to do in the sun things for a bit---I even snorkel in this clothing). These are available on the net and at special outdoor stores. Avoid visiting sulfer type springs and Scuba (Sorry, but protect your lungs).

 

I disagree somwhat here...we book excursion in advance all the time...just don't book walking tours or bike riding tours...make sure someone is driving you...check out my Alaska pics...we took a couple train rides and a bus and a DUCK and all things that did not require any work on my part...if a good day and you want to take a walk or bike ride go ahead and do so...just enjoy every day...don't take anything for granted...smile from the inside out

[My2Kitties]

Only tip I would add for cruising is always have an umbrella in your purse. Waiting in line (in full sun) to get back on the ship got me once and I paid for it with a nasty rash on formal night :( and a general ill feeling for the remainder of the day.

 

Good tip, thank you...I also have got caught in lines but I usually have a sweatshirt with a hood with me all the time...but the umbrella would be fit in a purse...

[tequilasunrise]

I disagree somwhat here...we book excursion in advance all the time...just don't book walking tours or bike riding tours...make sure someone is driving you...check out my Alaska pics...we took a couple train rides and a bus and a DUCK and all things that did not require any work on my part...if a good day and you want to take a walk or bike ride go ahead and do so...just enjoy every day...don't take anything for granted...smile from the inside out

 

Actually yes, I agree---you are right. What I meant was the really active ones....which unfortunately are the only kind I personally really like so I didn't think about the others. But train/bus rides, short excursions, catamaran rides where shade is possible, or excursions where you can adjust your activity to suit your needs are ok. And on a good day more/most things are possible, depending on your individual needs since this is a very individual disease.

 

But remember that, unlike most people with lupus, the OP also has lupus related lung problems and asthma, along with diabetes---and therefore must be a bit more careful than most typical folks. That doesn't mean cruising is a bad idea, or that you can't have fun, it's just something to think about. And also I should add that, with the lung issues, to avoid areas of the ship that are smokey.

 

Something I really like that you can enjoy---hang out on the top deck at sunset. The sun isn't very intense, but you get some, it's beautiful, and I think it's good for the soul. Have a fantastic cruise!