New Dx of RA... Not sure what to expect???

[TheMorgans]

Our family has been to WDW more times than I can count. But, this trip will be different. Last week I was dx with rheumatoid arthritis. I have been having a "flare" for about 6 weeks and had no idea this would be the diagnosis. I will start treatment on Thursday after next visit with rheumatologist. My current pain level is variable based on my activity level throughout the day. However, my joints are somewhat painful and swollen all the time.

I don't know what to expect as far as mobility issues. Just to look at me, I look like a very healthy person. I am open to renting a ECV, but I am worried about getting "the look" or the snide comment. The one that people give when they see someone on a EVC that looks like they are just too lazy to walk.

I have reworked our touring plans to factor in a rest period in the middle of the day - every day - for the first time ever. I also am planning at going at a much slower pace, and just doing my "must do's" The kids are all teens (17-12) and I feel comfortable with them going off as a group and doing their own thing and even using the bus system by themselves when I need a break. I have tried to explain that this trip may be different than our previous trips but, I cannot give a specific explaination because I don't know what to expect.

Any advice and/or tips would be appreciated. TIA

 

[canopynut66]

good luck with your treatments and I have RA and MS and I had to start several years ago renting a ECV as I not staying home until I absolutley have to. I rent from Walkers Mobility as I need soon as I get off the ME at the resort and then they have EVC there waiting for me and I have the entire time of my stay to food court/buses and the parks all day and the day goign to leave they have you park it at bell services and then my sister uses a wheelchair to get me on the ME and thru the airport the airlines we fly gets me on and off the airplane.but is just to much to ask sister to push me all over WDW as it is very hard on ones back to push a wheelchair. my joints swell horrible and I also look fine but I am not able to walk and some days cannot stand long enough to brush my teeth from start to finish...and some people do stare but I just thank god "they" never have to be on EVC as you cannot see things as well nor get up close to things and you look straight at peoples bellies all day long some get mad EVC load on buses first but that actually is a state law and those same people do not realize EVC is the last off and the last into most attractions or if not miss most of the fun games and things they have thru the normal lines. actually I was in WDW and had been there a week and went to get up one morning and could not stand up so we made palns to go home earlier and found out in two days had all this wrong with me..walking is not to be taken for granted... good luck to you

 

[Cheshire Figment]

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[Piper]

I have rented from both Walkers and Apple in the past. Both providers have had the ECV waiting for me when I got off the Magic Express. Apple was considerably less expensive and the service was the same as Walkers.

Your children do seem old enough to understand that you cannot do the parks the same was as you used to. One thing I would do is to give them a copy of The Spoon Theory to read (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf)
It is a good resource for you, too. You might want to explore the site a bit while you are there!

 

[Suelala]

Sorry to hear about your new diagnosis, but the best thing you can do is go to a rheumatologist right away, as you are doing. I have lived with RA for 20 years, and early treatment has really been the key to doing as well as I am. Hopefully you will be on your medication long enough for it to start helping prior to your trip, and it sounds like you will be.Once the meds get into your system, you will more than likely feel a huge difference. Take a rest when you need to, make sure you wear good, comfortable shoes and BREAK THEM IN well before your trip. Dont try to set new land speed records, and dont feel like you have to see it all in one day. I am now in my 50's and this will be my 6th trip since my dx. I have always done fine on the trips, because I make sure to take my meds, wear good shoes, and listen to my body. Be sure also to tell your Dr that you are going to Disney and will be doing a lot of walking and he/she may have some tips for you as well. Good luck, and I really hope you enjoy your vacation. I think you will have a great time.

 

[KPeveler]

Piper beat me to the Spoon Theory!

It sounds like you have things well in hand. One thing to consider (once you settle into treatment) is how the meds make you feel. One common RA med is methothrexate (MTX for short) and that med I know can make you feel nauseous for a couple days.

Try to get extra pain meds and nausea meds just for this trip. Your doc may be willing to give a bit more for a short term special occasion, especially the anti-nausea meds. (Just in general, fo any autoimmune treatment, having a prescription for phenegren or zofan can be a life saver, and not just on vacation!!)

Using the ECV itself may not be hard, but something your family will have to understand is that the pace goes slower, not just taking breaks, but also just traveling with an ECV can be a bit of a pain int the tush in crowds!

As to the "look" - I am 27, blonde, reasonable attractive (I bathe, groom, and dress with care) - I have a $5000 custom manual wheelchair, which is obviously mine, and I STILL get the look. I guess that some people are determined to mind other people's business. These people exist everywhere and if they were not judging you on the ECV, it would be something you are wearing, the color of your hair, the size of your keister, whatever This is the happiest place on earth. Apparently they dd not get the memo about this. My philosophy is to ignore them and have a wonderful time at disney!

 

[ratlenhum]

Sorry. I have it too and it sucks. For insurance reasons I had to "fail" aka "suffer" for a year on the cheap crap meds before they gave me the good stuff. Once I was on Enbrel I had 6 years free of anything, no pain, no stiffness, nothing. Led a normal life. I'm failing on that now.

But to hopefully help you. A medrol pack is a reset button for me. A few days into it I am completely inflammation and pain free, like nothing is wrong with me. When we go to disney my rheumy writes me a script for a medrol pack. I start it 2 days before we leave. She also gives me a script for 5mg prednisone tablets to continue after the medrol pack is done. For me it has been a trip saver. Ask your rheumy about it. Medrol packs are commonly given for flares. I hate taking steroids but if it means steroids and pain free Disney, or suffering with every step I take, give me the drugs!!!

 

[ratlenhum]

I just wanted to add, I know everyone is different, but I have to keep moving. If I'm moving all is good. Once I sit, whether it be for 5 minutes or 5 hours, everything swells up and stiffens up, and getting going is hard again. Even with the medrol pack, I am stiff in the morning, but I get up 20-30 minutes before my family to just start moving around. After about 20 minutes all is well again.

 

[LBAK]

Sorry about your diagnosis but you've gotten some great advice so far.

I leave myself extra time and I had relaxed my expectations. Whatever I get done in the parks is all good. Even with the ECV sometimes you don't accomplish as much as you'd hope to. It's all good though, you're at Disney.

I make sure I go to a resort with a hot tub. I find if I go in at night sleeping is much easier and I'm not quite as stiff the next morning.

Make sure you have enough of all your meds and I always let my rheumy know I'm going away. sometimes he has great advice. I also ask for something to help me sleep. The more restful my sleep the better I feel. I don't usually take anything but it's the pits to spend all this money on vacation and then feel miserable.

Have a great trip!

 

[ttintagel]

Thank you for starting this thread; I've actually learned stuff here I'll ask my rheumatologist about before my next trip. Welcome to the Sisterhood of the Traveling ow-it-hurts-to-put-on-my-Pants.