OT know I should talk to dr. but...

[schlepsnort]

I have a sinking feeling that when I do it will open up a whole new can of worms..
We are leaving in 42 days to our first trip to WDW. We have been planning every second of our trip. I have severe RA, two hip replacements and 3 joints in my right foot were fused along with my rt. ankle.
I'm doing Enbrel once a week and had been doing pretty good. But now my rt. knee is killing me. It keeps giving out and it hurts often.
I think it has something to do with the way they fused my foot, it seems like it's on an awkward angle which is throwing my knee out of wack.
I'm afraid that if I mention it to my doc then he's going to want me to start the whole 'procedure' --
1. go to Ortho-- have to get an x-ray then MRI done
2. Give me a cortisone shot
3 Give me painkillers which make me totally forget everything. I have gaps in my memory from times that I've needed to take them.
4. Figure out that I will either need yet ANOTHER surgery or tell me to try an orthotic device which most likely my insurance will not cover. Heck they really won't like the MRI idea either!
but I know that if I try to do WDW in the shape my knee is in now, it will only make it worse.
I just hate this feeling I get when I know that yet ANOTHER problem is starting to crop up just as I was starting to feel normal and able to do things again after the last surgery.
DH and I have said that if I need an ECV we will do it but after reading some ignorant posts on other threads where people are so judgemental I'm just not in the frame of mind to put up with the 'looks' I would get. Plus doing an ECV with 2 kids needing to be in a stroller would be hard, we'd also have a 3rd child walking.
I guess I'm just venting. I have an appointment for my check up in a week and I'm just dreading it.
That and I've noticed that I'm retaining a whole lotta water and am not sure what that is all about.
Grrr...I need a vacation! From my BODY!

 

[scroot]

I know the feeling. DW has JRA. We have been through new hips three times on one side twice on the other, and new knees.

Last time DW had knee pain it was "refered" from her hip. Had nothing to do with the knee.

If your pain is actually caused by the foot surgery, as you think, it may be solved by something as simple as orthotics.

All I know is that I empathize with your feelings of dread as sometimes when we have similar issues it results in surgery. But, sometimes it doesn't.

For us, we would rather find out the source than have worse damage happen.

Here's wishing you well as you decide on a course of action.

 

[schlepsnort]

I know I'll tell my Dr. it's just with the vacation so close (did I mention it was our first ever and I'm so beyond excited!) I'm dreading the outcome of what he might think we need to do.
It just gets frustrating.
That and I'm not so enchanted with getting a cortisone shot. It seems like the ones in the knee hurt more than in other areas.
I have found that if I wear my sturdier gym shoes (I just bought a pair of Avias) it helps but I also wear them out pretty fast. I bought a second pair for the trip and will not wear them until the week before to prevent blisters etc.
Thanks for listening!

 

[scroot]

A few years back DW injured a hip while we were visiting her folks in CA. We thought it was just soft tissue even though there was quite a bit of pain. Went to DL and DCA. After we got home we had x-rays and discovered that the hip was dislocated! Had to have a total revision.

We often talk about our first time to DCA was with a dislocated hip.

DW could use a vacation from her body as well. Often when she is frustrated around the house I say, "what do you need?" and she says, "hands that work." Or you can insert any body part.

Hang in there.

 

[emerymt]

I have RA too, haven't had any joints replaced yet but my hip is heading that way. I have used an ECV- I think I know what snotty post you are referring to I thought people at the park were really nice- I know it doesn't seem right but I thought people seemed extra nice because (like you) I am younger than the average ECV user. I think most people don't judge- they see you with your family, & put 2 and 2 together. When you get on and off of it, you won't exactly be skipping & hopping about, either. The parks are so big, though. I get around relatively well on a daily basis, but I cannot do the parks without an ECV. Can you walk miles every day? Don't ruin your trip because of some idiots.
The ones abusing the ECVs are pretty obvious- once at EPCOT I saw a group of five or six teenagers riding them around for fun. Some people ride them because they're too heavy to walk all day- but I wouldn't want to be them, either. I have a friend with MS who gets around at home pretty well but has to use an ECV in the park, too. No one has ever given her grief, either. Good luck.
BTW, I think your DH can rent double strollers.

 

[schlepsnort]

Thanks for the support everyone! I did go to my Dr. on Wednesday and he poked and prodded my knee (oh that is one part of the exam I really hate-- poke 'does this hurt' YES poke 'still hurt' YESSSSS)
And he did do the cortisone shot. He felt that it is bursitis of the knee bursa brought on by my walking not being the best due to previous surgeries. JOY. So for now my knee is feeling better but still a little sore. He also thought that I'm probably starting to lose the cartilage in there but not recommending surgery yet, maybe therapy. Double JOY. Not. The therapists are all really nice that I've had but I also wonder sometimes if they took training in medieval torture...
So as of now I'm hoping to make it through the MK on my own two feet with lots of breaks, but willing to look at the ECV if needed. I don't want to ruin our vacation with my body issues.
My issues have issues with their issues some days...

Thanks again everyone!

 

[Cheshire Figment]

So as of now I'm hoping to make it through the MK on my own two feet with lots of breaks, but willing to look at the ECV if needed. I don't want to ruin our vacation with my body issues.

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 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!

It is the "frequent breaks" which can be very annoying to the other members of your party. The first time I rented an ECV at Epcot it made my wife very happy since she was not being slowed down by me.

And you should really give serious thought to rental from an off-site company for several reasons (see the disABILTIES! FAQ).

 

[disfanRN]

Hi Carol- I have psoriatic arthritis, and take Enbrel every week-LOVE that drug, it has done wonders for me. I have great empathy for you, it must be so hard to have all that pain and joint fusions, etc, and raising little people.

I have 2 suggestions. My rheumatologist will give me a vacation steroid prescription when we go to WDW. I start it a few days before we leave, and take it the whole time we are gone. It is not a big dose, and he tapers it slowly. So, I am only on them for a short time. I was able to get off the daily steroids after Enbrel. He does it so I can feel good on vacation, and have less pain while I am more active with all that walking. I love my rheumatologist-he is the best. He treated my disease aggressively because I was so young (22) when I got it, and I believe it has saved me.
My second suggestion is to DO WHATEVER IT TAKES for you to enjoy yourself. Ignore others and their insensitivity. If you need a wheelchair- then use it. Take frequent breaks, eat well, and pre medicate for pain.

I wish you a wonderful trip!

 

[zumbergc]

I'd have to strongly recommend the ecv rental from an offsite location.

If its your first vacation to disney, you may not really anticipate how much walking will actually take place.

Just think about being on your feet for4 hours, 8 hours 12 hours, however long your in the park each day.
After that first day you are probably going to be pretty sore. You've had many sergeries, and generally speaking. Replacement areas have a little les mobility and can get aggrivated if over used. Have some friends and aunts w/ hip replacements and i have issues with most of my joints.

I suspect you will be in some serious pain if your try to walk and "just take breaks". That first time you rent a scooter is a rough one. I'm young, and well it was really hard for me the first time. However, I don't really advirtise to my friends, co-workers, I rent a scooter on vacation. I however don't want to be in pain at disney. So we do the scooter rentals. Of course if you have the scooter, and are feeling well enough to do a section of the park, on foot, then do it. Park the ecv in stroller parking, take the key w/ you and travel around on foot. It could be 10 minutes, 30 minutes, or an hour. All depends on how you feel.

I get pain in my knees, hips, low back, ankles, all over. I can't walk for long periods of time. Back before we did the scooter, I was in lots of pain afer the first day. I'd ice (I still recommend icing if it is helpful) in the morning and at night, and sometimes in the park too.

Being at the happiest place on earth, isn't as happy when your in pain, and sets your mood off some. Disney can be a little stressful, with it being hot, people in a hurry to see things, sometimes kids getting tired cranky when they need sleep or food. Add pain on top of that. It makes me a little more grumpy on a day when I'm starting it in pain, compared to a pain free day.

I suspect your family will be more happy not having to worry that your are in pain, or needing to stop and take long breaks because your legs are tired.
Disney is super wheel chair friendly, and don't worry about people judging you. Take heart, you know the ecv will make disney more enjoyable, and in less pain.

I don't use a scooter or wheel chair in my everyday life, but have learned I will be in lots of pain for more than a few weeks if I try to walk the whole time at disney. Being in pain for weeks after a trip isn't normal, and isn't worth it to me, not any more. I say hello ecv!!!

If your still on the fence about renting an ecv. At least print out and bring the names and phone numbers of several offsite ecv companies w/ you to disney. After that first day you could change your mind. The walks to the buses and resort from the buses is a long distance, so I highly recommend offsite ecv rental.

Good Luck,
Connie

 

[starwishing]

Thanks for the support everyone! I did go to my Dr. on Wednesday and he poked and prodded my knee (oh that is one part of the exam I really hate-- poke 'does this hurt' YES poke 'still hurt' YESSSSS)
And he did do the cortisone shot. He felt that it is bursitis of the knee bursa brought on by my walking not being the best due to previous surgeries. JOY. So for now my knee is feeling better but still a little sore. He also thought that I'm probably starting to lose the cartilage in there but not recommending surgery yet, maybe therapy. Double JOY. Not. The therapists are all really nice that I've had but I also wonder sometimes if they took training in medieval torture...
So as of now I'm hoping to make it through the MK on my own two feet with lots of breaks, but willing to look at the ECV if needed. I don't want to ruin our vacation with my body issues.
My issues have issues with their issues some days...

Thanks again everyone!

I felt the same way. I too have RA and felt really funny about having to use a ECV. I didn't want everyone looking at me thinking "she looks fine, she's just lazy" so I honestly was just going to do what you said, take LOTS of breaks and if I got in too much pain then I would rent an ECV. WHAT WAS I CRAZY????????? The more I thought about how much pain I was going to put myself in, how much time it was going to take me to recoup, how scared I was wondering how bad my flare up might be, how it could actually jepordize my time in Disney.....(and of course reading all these posts from these wonderful people ) I just announced to my family that we are MOST definitely renting an ECV!!!! I want to have FUN, and enjoy as much of Disney as I always have!!! I can't believe that I was even considering not renting one all because I was worried about people's opinions. So I will use one while traveling between rides & park it and stand in the line with everyone else. I say use one & to heck with everything else. HAVE FUN & ENJOY!!!


ps - had to laugh about the doctor comment....my doctor does the same thing.....squeezes & pokes around SO HARD, all the while I am crying out "OWWWWWWWWWWWWWWW" I actually have pain for the next few days & have to recoup, just from the visit!!!

 

[newtowdw1]

Hi. Just want to support you, no matter your decision. The hardest part about renting the ECV is the decision. I've been hurt for 12 years, since I was 25. Using the ECV at WDW makees our vacations great! Your kids will handle it ok. DH can rent or bring a double stroller and you can keep the walker with you. Just watch for his feet!

I found the ECV liberating. I no longer had to make the energy/emotional balancing act of "Come see this Mom!" and think, "If I go there now, will I be able to walk out of this park?" The Disney staff were so helpful and pleasant that I didn't have time to be uncomfortable.

In fact, most of my high school students know I'm broken. They are asking if I need an ECV for our March trip (a YES trip). They don't look down on me. Anyone who sees your daily struggle will be happy for you to be out of pain for a little while. My kids and students worry so much about how I feel, that I diminish their joy quite often.

Good luck. Oh, and take Glucosamine Chondroitin for your cartilage. Clinically proven to prevent loss of cartilage.

 

[PrincessShanShan]

I was hit head on by a drunk driver almost 3 1/2 years ago. I've had 6 surgeries on my right leg (knee and foot). I had a triple arthrodesis last year (fusion of three joints in my foot, sounds like what you have) and I have problems with my knee. My ortho. has already told me it has to be replaced, but I'm trying to buy some time. I took Supartz injections last Dec. for my knee. They worked great and just within the past two weeks or so, I've started feeling some pain and "slippage" in my knee. I can have the shots again in Dec. The shots come in a series of five--one each week for five weeks. The first one was awful and even made me cry. The rest weren't as bad. I've had cortisone before, and the first Supartz was way worse, but the end result has been so much better for me. I'm not your ortho., and you may need something totally different, but it's worth discussing with your doctor. I just turned 37 Wednesday so I'm not an "older" WDW visitor, but I use an ecv anytime I visit. I can walk but I just can't walk or stand for long periods of time. I have built up to about 30-45 min. un-aided and I can go up to 1 1/2 hours if I have something to hold onto. There is no way I could go all day in a park. Yeah, it does bother me because I look like a healthy (fairly) young person but I've had to come to realize we can't always see what others are dealing with. The ecv makes things much easier for me and my family and makes my vacation much more enjoyable. Try not to stress and worry about using one. If it helps you, then that's all that matters.

Shan

 

[starwishing]

I was hit head on by a drunk driver almost 3 1/2 years ago. I've had 6 surgeries on my right leg (knee and foot). I had a triple arthrodesis last year (fusion of three joints in my foot, sounds like what you have) and I have problems with my knee. My ortho. has already told me it has to be replaced, but I'm trying to buy some time. I took Supartz injections last Dec. for my knee. They worked great and just within the past two weeks or so, I've started feeling some pain and "slippage" in my knee. I can have the shots again in Dec. The shots come in a series of five--one each week for five weeks. The first one was awful and even made me cry. The rest weren't as bad. I've had cortisone before, and the first Supartz was way worse, but the end result has been so much better for me. I'm not your ortho., and you may need something totally different, but it's worth discussing with your doctor. I just turned 37 Wednesday so I'm not an "older" WDW visitor, but I use an ecv anytime I visit. I can walk but I just can't walk or stand for long periods of time. I have built up to about 30-45 min. un-aided and I can go up to 1 1/2 hours if I have something to hold onto. There is no way I could go all day in a park. Yeah, it does bother me because I look like a healthy (fairly) young person but I've had to come to realize we can't always see what others are dealing with. The ecv makes things much easier for me and my family and makes my vacation much more enjoyable. Try not to stress and worry about using one. If it helps you, then that's all that matters.

Shan

Oh my gosh, what a horrible thing to have happened to you!!!!!!


And to everyone else.....I think that this is such a wonderful thread. I think that it has wonderful information and the support is incredible on here!!

 

[winniedapooh]

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 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!

It is the "frequent breaks" which can be very annoying to the other members of your party. The first time I rented an ECV at Epcot it made my wife very happy since she was not being slowed down by me.

And you should really give serious thought to rental from an off-site company for several reasons (see the disABILTIES! FAQ).

This post is just the one I was looking for today...cheshire you have said this before but I needed a reminder. I leave in 10 days and had surgery 10 days ago on my right knee. After going to ortho this week to have stitches removed he said out of work for 1 month... ...un realistic with me but I am trying to be good this time so I will work half time for a month. I have had more surgeries on this knee than I can recall--mid to high teens---and have had several on my good knee from the damage I have done to it when the bad knee is hurting. Sorry this is so long. Ortho and dh said wheelchair---I of course know better ...so I came looking here as I have seen you write this before and you are so right. If I don't use a wheelchair then I will be out of work for a long long time and may end up totally screwing up all he has worked so hard to put together which will then make me ineligible for a replacement in the next few years. Thanks cheshire for the reminder!

 

[schlepsnort]

Well we have 4 days left until we leave and I've pretty much decided that if I need the ECV I will get one and just ignore the ignorant in the parks. We have so much planned (MNSSHP, MGM, and MK) and I don't want us to miss anything because of me.
It has been wonderful to read about other people in my situation and how you've dealt with it and the support.
Thanks again!