Can anyone with exp with Lupus(autoimmune/arthritic cond) help w/ park strategy?

[anne]

Hi - I don't know if this is the place to ask this, but since it does not fit with disabilities board I thought I'd try here . Anyone with an arthritic or auto immune disease have any strategies for getting the most out of their visit? I'm trying to figure out how to not slow things down for my family too much. This is my first time on this type of vaction since coming down with my disease, and I'm wondering how difficult it gets when you are getting so much activity. I plan on resting in the afternoon...have a 5 yr old son, so figure it would be a must anyway. I'm wondering if that will be enough. If you have an arthritic condition, does the humidity affect you? Being from the north west I am not used to it, and I do find weather changes can make me quite sore, leading me to wonder if humidity will be a factor....thanks for any input!

 

[maps]

My MIL has arthritis and when she came with us one year, we told her we would be renting her a wheelchair. She resisted at first becaause she doesn't use anything like that at home but when she saw how much walking we did she realized she wouldn't have been able to do it otherwise.

We just sat her in the wheelchair and my kids alternated sitting on her lap (since my husband had to push the wheelchair we couldn't bring 2 strollers)
It really made the trip much more enjoyable for everyone.

 

[dejr_8]

Don't worry about slowing down your family - worry about how intense the sunlight is in florida. Make sure you cover up exposed body parts and don't forget the hat.

Are you in a flare now?

You can always rent an electric scooter to keep up the pace. That way no one is responsible for pushing you and you won't get tired as fast.

 

[teedee]

I also have Lupus and the hardest park for me is Epcot. I always have to rent a wheelchair or electric scooter there. There's just too much walking. I generally do ok waiting in lines for attractions though. Animal Kingdom can be a bit of a problem because the sidewalks are so uneven. Thankfully all parks have so many air conditioned sit down attractions that there are plenty of opportunities to rest for a few minutes throughout the day.

I also do a lot better going in Fall or Winter when the heat and humidity isn't quite so bad. Also shorter lines are a plus. This year the only time we can go is in June, but with precautions it will be ok, I've done it before.

You're idea of resting in the afternoons is a good one. We send the kids to the pool while I get a nap and by the time we get back to the parks it's starting to cool off a little.

One thing that helps me is to get those heat patches and put them on my knees and ankles at night. They help with swelling and inflammation, and I usually feel better the next morning.

Terri

 

[Disney Fool]

Hi - I don't know if this is the place to ask this, but since it does not fit with disabilities board I thought I'd try here . Anyone with an arthritic or auto immune disease have any strategies for getting the most out of their visit? I'm trying to figure out how to not slow things down for my family too much. This is my first time on this type of vaction since coming down with my disease, and I'm wondering how difficult it gets when you are getting so much activity. I plan on resting in the afternoon...have a 5 yr old son, so figure it would be a must anyway. I'm wondering if that will be enough. If you have an arthritic condition, does the humidity affect you? Being from the north west I am not used to it, and I do find weather changes can make me quite sore, leading me to wonder if humidity will be a factor....thanks for any input!

Anne, I just sent you a PM.

 

[iluvdiznee]

HI,
I too have Lupus (SLE) AND RA! I have been to MK and DTD since I have been diagnosed and been in a mild to moderate flare up. I have to tell you that I accidentally left my meds at home on out two day trip. I didn't have ANYTHING except Extra strength Tylenol. I did OK at MK. I was beat that night. When we did DTD, I did too much. I was in so much pain, DH had to go back to the parking lot, get that car, and drive to the end to pick me up. I was too stuuborn to get a wheelchair, heck I was only 35 at the time.

NOW, I know! I will make sure I have ALL my meds, drink PLENTY of fluids, SUNCREEN, my best comfy shoes, and rest frequently, but not too long. I stiffen up quickly if I sit too long.

The humidity doesn't seem to bother me but then again, I have lived in Florida all my life. I am used to it. The heat is the same, I am used to it.

What meds do you take if you don't mind me asking? I take one in particular that is Fabulous (for me at least) for pain and stiffness and it cheap!

 

[Schmeck]

Definitely get an ECV! Check out the wonderful disABILITIES forum right here on the Dis for lots of great info about accessibility issues. Maybe even consider getting a Guest Assistance Card (GAC) to help you with lines, staying out of the sun, etc.

 

[starwatcher]

I have mixed connective tissue disease which is almost lupus. Try staying at a resort that has many ways to get to it. this year I am staying at the poly cause waiting a long time for busses hurt my legs. The poly has monorail access plus the TTC is next to it if i need to use a bus. Wear supportive shoes, rest often, use lots of sunscreen. When resting in your room elevate your legs cause the humidity constricts your blood vessels and spots your legs. The spotting does go away . You can still have fun at WDW just listen to your body when it says rest lol rest

 

[Talking Hands]

Anne definately is for the DISabilities board. We have people with all sorts of chronic problems over there. Many just lurk until someone asks about their particular need. You would be very welcome there. I have multiple chronic illnesses and would recommend an ECV because of all the walking. Will PM you about other things.

 

[anne]

Hello everyone - thaks you all so much for the tips and pms...I have an autoimmune disease that mimics Lupus, and the joint ache and muscle problems can get pretty extreme if I overdo it. The hardest part is remembering that even though I am 34, I cannot go crazy cleaning my house, or going for too much of a walk etc. I had not even thought about this in connection with DW but I just recently had a flare that got me to thinking/worrying. It is great to see so many of you manage it so well and can enjoy the parks. It gives me confidence I can too!

I guess a wheelchair is something I will have to do if I have a day that is too difficult, but it's hard to accept needing one (mind block) - plus some of the threads on here have made me a bit nervous since I would not 'look' like I need one!

Starwatcher - we are staying at the Poly for the 1st 8 nights - after reading your post I am glad I am...never really thought of that. Can you tell I am new to travelling with this . Last 6 nights are at AKL, but I can always rest there while my son and husband visit the animals a million times a day!! (5yr old is animal nuts)

iluvdiznee - I was on Plaquinal (sp) - an anitmalarial. I don't know if they use it in the states? Luckily for me (as it frequently made me sick/dizzy) I went into a remission of sorts. I have been managing ok as long as I am careful - rest is a big factor. My specialist just presecribed Naproxyn for use as needed as I have been having a bit more trouble of late, so I am hoping that will work. I don't feel I have been bad enough to warrant full time back on prescriptions ( I am stubborn about that ). I just want to be able to do everything with my son ...thanks again. There are just wonderful people on these boards!

 

[canwegosoon]

I had medicine induced Lupus, so mine is different than most. But a great stragety is to do indoor or show type attractions during the high heat/sunny times of the day(eg Haunted house/it's a small world/Mickey's Phil/etc. I would use FP to get through lines quickly where poss., and being sure to use the window stragety. Then continue with your plan for a good rest in the afternoon. With the EMH I would target the rides that have normally very long waits or are out in the sun a lot(eg BTM). Good luck, Make a list of must do's and anything extra is a plus!!

 

[anne]

I had medicine induced Lupus, so mine is different than most. But a great stragety is to do indoor or show type attractions during the high heat/sunny times of the day(eg Haunted house/it's a small world/Mickey's Phil/etc. I would use FP to get through lines quickly where poss., and being sure to use the window stragety. Then continue with your plan for a good rest in the afternoon. With the EMH I would target the rides that have normally very long waits or are out in the sun a lot(eg BTM). Good luck, Make a list of must do's and anything extra is a plus!!

Thanks - good idea about EMH. I had not really thought about evening hours. WHen MK is open late we could have a BIG nap in the afternoon....

 

[SueM in MN]

Anne definately is for the DISabilities board. We have people with all sorts of chronic problems over there. Many just lurk until someone asks about their particular need. You would be very welcome there. I have multiple chronic illnesses and would recommend an ECV because of all the walking. Will PM you about other things.

Yes

If you check out the disABILITIES FAQs near the top of the disABILITIES Board, you can get a lot of info about the different ways to get a wheelchair or ecv (loaned from resort, rent from parks or from one of the off-site rental places). There is also information about downloading the official Guidebook for Guests with Disabilities and also a link to a thread about ride boarding if you need a little extra time to board.