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Anyone have Lupus?
- Thread starter MaXXimus
- Start date
Do you know if she has it pretty bad? My daughter was in the hospital a year and a 1/2 ago for 2 weeks getting IV's and required weekly trips to Childrens Hospital of Philadlephia to get IV's and then we had a few months of inhome IV's with a nurse. Our doctor recommened sunblock all year long as well as minimal time in the sun... like swimming he recommended no more then an hour. Scariest thing is that both wife and I got laid off and lost our medical coverage, so our daughter has been off the meds that keep the symtoms repressed and any lenghtly amount of time in sun could possibly make her sick again.
speck76
Well-Known Member
without yourself and your spouse having jobs and medical coverage, and knowing the trip to WDW could make your daughter sick ..... I question your priorities....
WaltzingMatilda
Member
How awful! I'm sorry to hear about your situation. If I might recommend, since it seems you live in PA, the Children's Health Insurance Program (CHIP). I don't know the direct link but if you go t to www.state.pa.us I think there is a link that can help you. If you're outside of PA, I'm sure your state has a similar program. I don't know enough about Lupus to offer any advice for the trip, sorry.I hope things turn around for you soon...and I hope you get to have a wonderful trip!
Honestly no disrespect intended but I take major major offense in that kind of statement.
Our trip was planned when we were both employeed and Im sure you are probably unaware of the circumstances behind this trip... just so you know, we are not paying for this trip. My father passed away this past Sept 21st and mom wanted some of the insurance money the go towards something special that we could all enjoy... so WDW is what she suggested.
As for my daughters illness, that is why I have been in touch with parks concerning special needs. Many people go there with Lupus and all other ailments... its the idea of planning ahead and being smart about it and seeing what options are available to make our trip a little more enjoyable while lessening the stress.
I appreciate the thoughtful reply Waltzing... we are in Delaware and have been to the local agencies and believe it or not they dont offer as much as PA does. We are fortunate though... my wife just recently found work within the last couple weeks. Insurance wont kick in till around our trip but her employer has promised to look into getting the insurance activated before the full 3 month waiting period... crossing our fingers.
ToTBellHop
Well-Known Member
Just be smart and follow the doctor's orders. The sun is VERY strong in Orlando in mid-June as it is very nearly overhead. UV Indices are 10+ (Extreme) every day. Avoid too much sun exposure and strategize so you are indoors a lot. Epcot is the best park to be able to remain out of the sun. Animal Kingdom is the worst. And DEFINITELY avoid Blizzard Beach--the white paint only magnifies the impact of the sunlight and it is very easy to sunburn there.
WaltzingMatilda
Member
Delaware...like it says in your little information thingy! :hammer: Sorry!
Well, I am glad to hear the good news about your wife's job. Anyways, you should come and say hi in the MJ threads...we're in Chit Chat, and everyone is very nice there.
Best Wishes! :wave:
Ella's Mommy
Active Member
When you assume you make an a** out of yourself.
I would definately try to go between Nov and May cause its not brutally hot like the summer. I dont know anyone with lupus but I know you want to make the trip special for your daugther. When I was just there in January the hottest day we had was 80 degrees. All the rides are super air conditioned. When we go and we need to cool down we ride the slow moving inside rides like HM, POTC, IASW, or CoP(this is the best cause its like 15 mins long!!) Good to hear about the job!! Hope you guys have an awesome time, but it disney so it should be magical:wave:
Raven66
Well-Known Member
I've known someone with lupus, but in regards to going to WDW I'm sorry i can't be of any help. But maybe a few suggestions:try and buy some of those water fans from wal mart. Don't buy the ones in the parks because they are way expensive. I made the mistake of looking away for a minute and my husband had one. I mean he can spend money on what he wants but I asked him before we left on our trip if we should buy some and he said we wouldn't need them. I guess we needed the 20 dollar one. :lol: And another thing would be to buy a bottle of water and just keep refilling it, but bring with you some of those kool aid singles or crystal light singles, because to me the water taste awful. I hope your whole family has a wonderful time and I'm sorry for the loss of your father.
As posted by another, I would get the GAC and only use if you feel necessary. You might want to think about renting a EVC or wheelchair if she needs. Tell her not feel embarrassed or guilty for using them. Do what ever she needs to enjoy herself and then the rest of you can enjoy yourselves too. You might want to go back to your hotel to rest and get out of the sun midday. I don't have lupus, I did know someone who did and I can sympathize with you. I have fibromyaglia and I can relate to some symptoms. Just don't try to do it all. Just go slow and enjoy the things that are important to you. Also you might want to look at PassPorter's Walt Disney World for your Special Needs by Deb Wills and Debra Martin Koma. It gives some good tips for many needs so it could help others in your party too. These women also have a good website with good info as well as this site. The site is www.allearsnet.com. These are my two favorite sites and have helped alot. Good luck to you and enjoy the moment.
speck76
Well-Known Member
mousermerf
Account Suspended
Just make sure you get the right GAC. Getting one that says you can use the FastPass line isn't what you actually need. There's a specific coding for being out the sun and in airconditioned queues/alternate waiting areas.
If you just get the "FP Line" one, you'll be out of luck at attractions that don't offer FP or have a special wheelchair queue. The "no sun" one (it usually has a green stamp - read the card, don't assume they gave you the right one) will have the CM's making sure you're out of the sun as much as possible.
If you just get the "FP Line" one, you'll be out of luck at attractions that don't offer FP or have a special wheelchair queue. The "no sun" one (it usually has a green stamp - read the card, don't assume they gave you the right one) will have the CM's making sure you're out of the sun as much as possible.
WDWKat26
New Member
My Brother-In-Law's mother has to have other people give her shots daily. I'm not sure as to how severe it is because I don't ask her much about it. But, either way please do know that the weather in June is HOT. We're talking UV Index of 10, Highs in the 90's and very humid. Please be careful.
ThumperDude
New Member
Not to put a bee in your bonnet. But check very carefully with your (new?) insurance company for coverage. Most will not cover pre existing conditions. For your families sake, I hope they do and everything works out for you.
Also, like the other poster said, do not allow your DD to be embarrassed or humiliated by others due to her condition. Use any and all aid Disney can offer. The main thing is to keep her safe. And just as important, see that she has a great time along with the rest of your family. Best of luck and have a FUN vacation.