Rheumatoid Arthritis...making it easier in Park.

[pumpkinfish]

I haven't had to post in this forum in awhile, but wanted to seek some advice.

My joints have been getting more inflammed lately and I am nervous about our upcoming trip. I am currently on Enberyl shots. During previous Disney trips I have been on Methotrexate and Enbreyl or Methotrexate and Prednisone (glad I am off that! ). Back in July I took my last dose of Methotrexate because DH and I want to work on getting pregnant and I can't while on that medication.

Anywho, I am looking for advice on taking care of my joint pain (mainly my knees) while at WDW. Usually the knees swell up, but the excessive walking makes them ache to no end.

I don't mind renting a wheelchair (getting one for free from the resort is an option, we have done this before) but I hate how DH has to push me. Renting an ECV seems so expensive Plus I'm young and I don't like the looks.
Is there a ritual you can reccomend or OTC drug to suggest? I take Tylenol arthritis currently when needed due to my recent wrist pain. I need something more potent for the knees though.

TIA!

 

[HarbinsMom]

First off, I completely sympathize. I'm in my mid-40's but have been suffering since I was 16. I was diagnosed in my mid-20's and have been dealing with it ever since. Lots and lots of different meds, physical therapy....the whole gambit.

I have done both DLR and WDW and could not do it without an ECV. I absolutely hated the idea, but had no choice if I wanted to go. I have used a cane since shortly after I was diagnosed and I understand about being young and feeling old. But, bottom line, it's your vacation. No one there will know you, so enjoy yourself and more importantly, take care of yourself. I usually spend the next week in bed after our 10 days or so at DLR or WDW. It takes that much out of me. Have fun, though.

 

[Cheshire Figment]

I don't mind renting a wheelchair (getting one for free from the resort is an option, we have done this before) but I hate how DH has to push me. Renting an ECV seems so expensive Plus I'm young and I don't like the looks.

Please ask 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 travelling 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!

 

[Momelie]

Boy, can I relate! Instead of Enbrel and MTX, I'm on Remicade, but other than that, I'm there.

I think you're going to find that a wheelchair is going to be your best friend, especially in MK. Other places, you could get an ECV, but if your DH is physically able to push you when needed, you'll be much happier with the wheelchair. It saves a great deal of time spent maneuvering an ECV, if you aren't used to driving one. Also does tighter turns, and fits into smaller spots.

I tried to walk it a couple of weeks ago, but by the second day, it was just too much, and sent me into a flare - not fun! Next weekend, I'll definitely be back to my wheelchair, and carrying my cane.

As far as other "tricks," I've found that the disposable heat wraps are good at the end of the day, after you get back. Hot tubs at the resorts help, too. Propping the knee up on a pillow with ice might help - doesn't work so well for me, though. I've got a pair of Crocs RX that are made for plantar facitis, and they really are helpful when walking all day - they got me through a summer in Italy and many Disney trips.

Hope you have a wonderful time!

 

[pumpkinfish]

Boy, can I relate! Instead of Enbrel and MTX, I'm on Remicade, but other than that, I'm there.

I think you're going to find that a wheelchair is going to be your best friend, especially in MK. Other places, you could get an ECV, but if your DH is physically able to push you when needed, you'll be much happier with the wheelchair. It saves a great deal of time spent maneuvering an ECV, if you aren't used to driving one. Also does tighter turns, and fits into smaller spots.

I tried to walk it a couple of weeks ago, but by the second day, it was just too much, and sent me into a flare - not fun! Next weekend, I'll definitely be back to my wheelchair, and carrying my cane.

As far as other "tricks," I've found that the disposable heat wraps are good at the end of the day, after you get back. Hot tubs at the resorts help, too. Propping the knee up on a pillow with ice might help - doesn't work so well for me, though. I've got a pair of Crocs RX that are made for plantar facitis, and they really are helpful when walking all day - they got me through a summer in Italy and many Disney trips.

Hope you have a wonderful time!

Ahh...thanks for understanding! I was actually discussing this with my DH last night. I guess I just don't feel comfortable using an ECV when I am still capable of walking. I've done the wheelchair thing and it was ok...I just felt bad for DH. It is already hard enough feeling like a burden (just personal feelings that come with somthing like RA) with having to rub my wrists and knees during flare ups or after long days at work.
I just feel guilty by using the ECV when I know someone who is older or in more need would need it. Unfortunately I know I will push myself before I ever ask for help.
As far as the tricks, thank you! I probably won't be going for the Crocs but will be taking along instant heat packs this trip. I love using the hot tubs but sadly they always seem overflowing with loud guests drinking and having a good time I was able to use the hot tub once during our last trip at POR but have never been able to use it at night at POFQ.

 

[Piper]

I understand, too. I was diagnosed with arthritis at 12, Lupus at 22. I have fought using aids my whole life. Then when I would finally give in and get what the doctor would be recommending, I would think, "Why didn't I do this a long time ago!" Then I fought the next recommendation!

I think it is just human nature to not give in--but at the "old crone" stage of 62, I now wish I had given in to using a few things earlier--maybe the damage now would have been less. Also, I now realize the impact my being in pain has on the rest of the family. They are much happier if I am happier. The independence of an ecv and the joy of less pain for me impacts everyone!

 

[pumpkinfish]

I understand, too. I was diagnosed with arthritis at 12, Lupus at 22. I have fought using aids my whole life. Then when I would finally give in and get what the doctor would be recommending, I would think, "Why didn't I do this a long time ago!" Then I fought the next recommendation!

I think it is just human nature to not give in--but at the "old crone" stage of 62, I now wish I had given in to using a few things earlier--maybe the damage now would have been less. Also, I now realize the impact my being in pain has on the rest of the family. They are much happier if I am happier. The independence of an ecv and the joy of less pain for me impacts everyone!

You really make a valid point! I do need to be a little more selfish with my needs and knowing what will ultimately be the best for me (and my loved ones). I'm thinking I will come to terms with my DH before we leave ---about "what if" scenarios. The ECV seem expensive and maybe I will just get a wheelchair from POFQ and play it day by day. We end up coming back to the resorts mid-day to rest anyways and if I need to, I can use the wheelchair at that point.
I appreciate the opinions that have been shared. It is nice to hear from others who have been in my shoes.
Piper, my aunt is suffering from Lupus so I hope your battle is going as well as possible for you!

 

[KPeveler]

I have decided to learn from a lot of people on here and give up being stubborn about aids in the beginning - I am 22, don't have RA, but have EDS (and the arthritis that goes with that) and probly Addisons... I can walk some in the parks, but if I have my chair with me, I would be able to go through the whole day with significantly less pain. while i will push through pain in most of my daily life, i have decided at disney to go as pain-free as possible!

 

[Mickiethepooh]

It is more selfish to not use whatever you need in this case that should be an ECV. and remember that almost all the people using ECVs CAN walk to some degree, other wise they would be in a WC if they could not walk at all since transfer to and from an ECV is necessary at DW and most anywhere else.
It is false pride to not use what ever you need to live the fullest life you can.

 

[PrincessSuzanne]

As far as other "tricks," I've found that the disposable heat wraps are good at the end of the day, after you get back. Hot tubs at the resorts help, too. Propping the knee up on a pillow with ice might help - doesn't work so well for me, though. I've got a pair of Crocs RX that are made for plantar facitis, and they really are helpful when walking all day - they got me through a summer in Italy and many Disney trips.

Hope you have a wonderful time!

Off Topic, could you tell me a little more about the Croc RX, I have plantar fasciitis and really suffer some days, I would love to find a shoe that would help that. I have the Mickey head Crocs and 2 pairs of the Athens flip flop style, but even with those after a long day of errands my feet are worse for wear. Some mornings I can barely stand for my feet to touch the floor.

I give another vote to using some sort of assistance. I use an ECV at WDW and sometimes at Target and the grocery store (depending on how my feet feel) and if I walked WDW, I wouldn't be able to walk the next day, no matter how comfortable my feet feel. I walked at WDW the first time we went and this was before I developed PF and I had to rent an ECV twice, now everytime we go I rent one for myself and one for mom (she will soon have one of her own) offsite though unless we are there for only 1 day. Off site rental is less expensive than WDW and the more days you rent the less it becomes for a week.

Suzanne