Lupus What should i expect

[Ruewen]

Hello i have Lupus and Am planning to go to Disney in December.

I wanted to make sure i could use the handicap entrance to the rides as i heard they are in the shade or inside. Would i need a doctors note to be able to do this and if i do need one what should it say?

Also if you have Lupus and have done Disney how was the experiance from a Lupus point of view?

 

[Happy Dreams1]

Hi there! And welcome!!!!!!! To answer your question: no. You don't need a doctor's note to do this. You need to go to City hall first and get a GAC(Guest Assisstence Card) . And the only thing you have to explain is HOW you need to be assisted. This GAC, as you've mentioned, allows you to wait in alternative line in the shade or airconditioned place. Show the GAC to the CM before the attraction. In fact, by law, disney can't even look at that doctor's note.
Now, about Lupus, I don't have it, but my mom does. She is currently in remission. She, like you, avoids durect sunlight and goes to the shade. Make sure to get as much sleep as possible during the night and don't overstress because that may activate some symptoms-as it had done with my mother. Organize everything with time. If you feel too unwell in the parks, there are First Aid stationes there. Juat ask ANY CM(cast member-employee) to direct you to the nearest first aid station. I don't know if you need a wheelchair, but that is at your discretion. It's good that you;re going in Christmas so it won't be too warm! Ofcourse, if you're feeling too tired, just go back to your hotel. My mom does really well in the park and I hope you will too!! Remember, listen to your body. Have a magical time!

 

[Ruewen]

Thank you Happy Dream . Great advice. Can you ask your mom if any Restaurants stick out as being uncomfortable because of the lighting?

 

[crashbb]

I have Lupus as well.

Very few of the mainstream lines are out in the sun (Dumbo, the Aladin carpet ride, the spinning ride at DAK are the ones that come to mind), so you should be fine for most rides. I don't do any of those spinning rides anyway, so I'm not sure if they have any alternative places to wait. If sun exposure is your only issue, I've never found a GAC to be particularly helpful.

The bigger problem for sun exposure is walking between rides. We tend to go early and then take a break during the peak period of sun and then return in the late afternoon/evening. And I wear a big shady hat and cover up as much as possible (in light clothes with UV protection).

I second the PP's advice about making sure you get enough sleep and keep hydrated. For me, my diet greatly effects my lupus symptoms, so I make sure that I am very careful there.

 

[Happy Dreams1]

Thank you Happy Dream . Great advice. Can you ask your mom if any Restaurants stick out as being uncomfortable because of the lighting?

You're welcome! Well, none are a nuisance, but ofcourse, that's her opinion. If you see, even before you enter the restaurant, that it may bother you, don't go in. Or if you do go in and don't like it, just get out quickly.

 

[Happy Dreams1]

I have Lupus as well.

Very few of the mainstream lines are out in the sun (Dumbo, the Aladin carpet ride, the spinning ride at DAK are the ones that come to mind), so you should be fine for most rides. I don't do any of those spinning rides anyway, so I'm not sure if they have any alternative places to wait. If sun exposure is your only issue, I've never found a GAC to be particularly helpful.

The bigger problem for sun exposure is walking between rides. We tend to go early and then take a break during the peak period of sun and then return in the late afternoon/evening. And I wear a big shady hat and cover up as much as possible (in light clothes with UV protection).

I second the PP's advice about making sure you get enough sleep and keep hydrated. For me, my diet greatly effects my lupus symptoms, so I make sure that I am very careful there.

That' it! That's what kills ya. What the post said..avoid times of the day where you know the sun will be in most direct contact with you and when the day will be at its hottest. Those are the times to go eat, watch shows etc. My mom also wears hats and puts alot of sunblock. Wear comfortable shoes. If the GAC is helpful or not, depends on the person and their specific needs. Eat refreshing meals and drinks.

 

[crashbb]

You're welcome! Well, none are a nuisance, but ofcourse, that's her opinion. If you see, even before you enter the restaurant, that it may bother you, don't go in. Or if you do go in and don't like it, just get out quickly.

Like your mum, I've never had an issue with lighting in restaurants (I don't in general - though I know that some people with Lupus do), but some advice:

1) Check out reviews on the restaurant board (and check out some of the photos).

2) Some of the restaurants have different areas with different levels of lighting. Ask to be seated in the area that would suit you best (even if that involves asking after you get to your table).

3) If it is a restaurant in a park (or you are at the resort earlier), check out the restaurant before your ADR, so you can adjust your plans if needed.

4) Get the phone number for the actual restaurant you are interested in (don't just call guest services) and ask them about their lighting - tell them your triggers and see what they say.

 

[Ruewen]

Awesome tips!

Hey crash did you use a scooter? or Happy did you mom use a scooter?

 

[Happy Dreams1]

Awesome tips!

Hey crash did you use a scooter? or Happy did you mom use a scooter?

No, my mom does not use a scooter. She is doing very well on her own and she likes it! But again, this is according to her physical state. If you feel you need one, get one.
Crashbb, keep fighting Lupus!

 

[crashbb]

No, I'm lucky and I have a relatively mild case of Lupus (though, as we all know, that can change at any time) and I my stamina is okay (assuming I get enough sleep).

There are a number of threads about ECVs though and if stamina is an issue for you, I'd recommend getting one. I know that WDW does rent them, but many suggest getting them from an off-site company.

If you do use diet modification (I eat gluten free), WDW is AMAZING!

BTW - I re-read my first post and realise that I came across as rudely saying you shouldn't get a GAC. I didn't mean to - I just didn't find the help for sun exposure to be all that helpful. WDW's suggestion for stamina issues is an ECV or wheelchair - the accessible entrances do not tend to reduce walking distance (and, as with the sun exposure, the biggest issue is going between rides/shows).

 

[Happy Dreams1]

No, I'm lucky and I have a relatively mild case of Lupus (though, as we all know, that can change at any time) and I my stamina is okay (assuming I get enough sleep).

There are a number of threads about ECVs though and if stamina is an issue for you, I'd recommend getting one. I know that WDW does rent them, but many suggest getting them from an off-site company.

If you do use diet modification (I eat gluten free), WDW is AMAZING!

BTW - I re-read my first post and realise that I came across as rudely saying you shouldn't get a GAC. I didn't mean to - I just didn't find the help for sun exposure to be all that helpful. WDW's suggestion for stamina issues is an ECV or wheelchair - the accessible entrances do not tend to reduce walking distance (and, as with the sun exposure, the biggest issue is going between rides/shows).

I agree. I sent you a PM btw.

 

[Piper]

I have Lupus among some other challenges. I wear a solumbra hat and clothing. I also go early and late when the sun is better. I was able to walk the parks for many years and did not need a GAC. It doesn't really help with the sun because you get most of it going between rides......most of the lines are shaded.

If you do get an ECV, you will still go in the mainstream lines. It is also very stressful because you cannot enjoy the scenery. You have to be constantly alert for people stopping sudenly in front of you or cutting in front of you. You also have to deal with comments from people who think you "don't look sick" and are trying to cheat the system. There is no "front of the line access" and you may actually wait longer if you are in an ECV because of a limited number of cars equipped for people with disabilities.

If you can walk the park--do it. Take plenty of rests. A nap in the middle of the day at your resort will enable you to enjoy the parks at night!

 

[Happy Dreams1]

No, I'm lucky and I have a relatively mild case of Lupus (though, as we all know, that can change at any time) and I my stamina is okay (assuming I get enough sleep).

There are a number of threads about ECVs though and if stamina is an issue for you, I'd recommend getting one. I know that WDW does rent them, but many suggest getting them from an off-site company.

If you do use diet modification (I eat gluten free), WDW is AMAZING!

BTW - I re-read my first post and realise that I came across as rudely saying you shouldn't get a GAC. I didn't mean to - I just didn't find the help for sun exposure to be all that helpful. WDW's suggestion for stamina issues is an ECV or wheelchair - the accessible entrances do not tend to reduce walking distance (and, as with the sun exposure, the biggest issue is going between rides/shows).

crashbb, i sent you another PM

 

[SueM in MN]

There is more information about Guest Assistance Cards in post #6 of the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature to get there.
You don't need a doctor's note, although some people feel more comfortable having one. You do need to be able to explain what your issues are - not your diagnosis - Lupus won't mean much to the CM and one person with Lupus may have very different issues than another person with Lupus (or any other 2 people with the same condition).

There are very few attractions that have a Handicapped Entrance because the ADA requires Mainstream Access (where the line is accessible to meet the needs of most guests with disabilities.)
When there is a different handicapped entrance, it is usually because something about the regular entrance makes it not wheelchair accessible (stairs, sharp turns, etc). And some of the Handicapped Entrances are right out in the sun, where the 'regular line' is well shaded. This is the case at Dumbo, where we waited with DD's wheelchair in the sun while the guests in the regular line had a roof over them the entire time.

You will find that most of the regular attraction queues are well shaded, even in AK where the attractions are mostly outdoors, so the more important time and thing to consider for you will be the time you are walking between attractions.

If you decide to rent an ECV, post #2 of the disABILITIES Board has information about renting ECVs and wheelchairs, including phone numbers and web links for off-site rental places.

If you plan to go to AK, watch the weather and go there on the coolest day. Many people feel that is the hottest feeling park.
Also, take advantage of early and late Extra Magic Hours if you can. It's possible to see many attractions with short waits and you will avoid the hottest and sunniest times of the day.
Epcot is a good park for a cloudy day or an evening since the distances between attractions is large. Once you are in a building, you will be in for a while, but it can be a fair walk between things.

 

[SingingMUA]

LIVE thread.... LIIIIIIIVE!!!!!!



Just resurrecting an old-ish thread to echo what PPs have said. I also have Lupus, and as others have said, getting enough sleep is key for me. If I don't get at least 7.5 hours each night (that's the bare minimum... I prefer to get at least 8.5), then I start to feel bad VERY quickly. As much as I sometimes hate to "end" the fun while at WDW, I try to make sure that I return to the room at a decent hour, and get at least 8 hours of sleep each night I'm there.

I also try to stay consistent with my bedtime (again, verrrrrry hard to do while at WDW). My bedtime at home is about 10pm (lights out... usually fall asleep by 10:30-ish), and wake up time is about 7am on weekdays, and about 8am (ish) on weekends. So while at WDW, I try to go to bed no later than 11:15pm(ish) and wake up around 8am ish. Usually the going to bed part isn't too hard because I'm usually tired from all the fun of the day!

I break my day up (especially when visiting in the summer months), and hit the parks in the a.m., have lunch, then head back to the resort for rest. Then hit the parks again around 5pm or 6pm, and then call it a night around 10:30pm (or earlier).

I can't do sun protective clothing (wearing long sleeves in the summer heat would make me spontaneously combust!), but I do wear SPF 100+ sunblock, and I make sure to wear hats, and I will carry an umbrella to use as a shade also.

Taking things at a leisurely pace (especially in the summer) is best for me. I just don't have the stamina for commando style visits. Which just means that I have to plan more trips, because I can catch the stuff I didn't get in the previous trip!

The first few trips after I had been diagnosed, I had to get an ECV, for stamina and joint pain, and for the fact that I have vein damage due to a DVT (that's how I got diagnosed), and that makes it hard to walk sometimes, lots of pain and swelling. But on the last trip (back in July this year) I was able to walk all the parks without assistance! That was a big moment for me, and I was very excited.

Anywhoo, I'm always excited to meet other Lupies! If anyone wants to PM me anytime, feel free.

 

[cm8]

LIVE thread.... LIIIIIIIVE!!!!!!



Just resurrecting an old-ish thread to echo what PPs have said. I also have Lupus, and as others have said, getting enough sleep is key for me. If I don't get at least 7.5 hours each night (that's the bare minimum... I prefer to get at least 8.5), then I start to feel bad VERY quickly. As much as I sometimes hate to "end" the fun while at WDW, I try to make sure that I return to the room at a decent hour, and get at least 8 hours of sleep each night I'm there.

I also try to stay consistent with my bedtime (again, verrrrrry hard to do while at WDW). My bedtime at home is about 10pm (lights out... usually fall asleep by 10:30-ish), and wake up time is about 7am on weekdays, and about 8am (ish) on weekends. So while at WDW, I try to go to bed no later than 11:15pm(ish) and wake up around 8am ish. Usually the going to bed part isn't too hard because I'm usually tired from all the fun of the day!

I break my day up (especially when visiting in the summer months), and hit the parks in the a.m., have lunch, then head back to the resort for rest. Then hit the parks again around 5pm or 6pm, and then call it a night around 10:30pm (or earlier).

I can't do sun protective clothing (wearing long sleeves in the summer heat would make me spontaneously combust!), but I do wear SPF 100+ sunblock, and I make sure to wear hats, and I will carry an umbrella to use as a shade also.

Taking things at a leisurely pace (especially in the summer) is best for me. I just don't have the stamina for commando style visits. Which just means that I have to plan more trips, because I can catch the stuff I didn't get in the previous trip!

The first few trips after I had been diagnosed, I had to get an ECV, for stamina and joint pain, and for the fact that I have vein damage due to a DVT (that's how I got diagnosed), and that makes it hard to walk sometimes, lots of pain and swelling. But on the last trip (back in July this year) I was able to walk all the parks without assistance! That was a big moment for me, and I was very excited.

Anywhoo, I'm always excited to meet other Lupies! If anyone wants to PM me anytime, feel free.