Worried about my RA

[Simba's Girl]

and worrying that I'm worrying about it...

This will be my first trip since being dx with RA 2.5 years ago.

We are driving from MA in Jan. & I have 3 DDs ages 10,7&3. First time staying at the poly too...and we are former DVC owners (not a huge story but not for this topic either)

It took a while but it seems we have found a med combo that works for me. I mean night and day from what I felt like before, and I worry that I'll slowly slip back there again. I have had multiple drug failures after all...

But, my pain and fatigue are fairly in control right now and I am looking forward to getting my life back to somewhat normal.

So the point of this post is to get my worries out there and to acknowledge that I may have to slow it down from what I want to do. And that's ok too.

Is there anything to do if the pain begins to creep into my trip? Any comfort measures I should consider bringing? What should I have as 'backup' just in case?

Thx,
Heather

 

[OneLittleSpark]

Hi there Heather! Firstly, don't panic! Disney is the most accommodating place for those of us with disabilities (I've got Fibromyalgia, so understand the pain and fatigue all too well). Also, the Disney magic and the climate should do you a lot of good while you're there.

I would strongly suggest you rent yourself an ECV (electric scooter) for the trip. This will help you conserve your strength, and keep your pain levels as low as possible, so you can enjoy your trip to the full. If you rent from an off site company (see the disABILITIES FAQ thread for more details), you'll be able to use the ECV for the whole trip, including around the resort and at DTD. Also, the off site rentals tend to work out cheaper over the length of a trip, and are generally more maneuverable.

Use all of the help that Disney offers, and don't feel guilty about doing so. Yes, you might be able to push yourself through half a day at the parks, in pain and miserable, before having to go back to the hotel and spend the next three days in bed, but really, why do it? Take the ECV into ride and show lines where you can; where you can't, they will have wheelchairs you can transfer into. All the parades and shows (except Wishes) have wheelchair viewing areas, so you won't need to worry about people standing in front of you at the last minute. If you need a break during the day, you can use the beds in the First Aid rooms for a nap.

Try to have a bit of a 'plan of attack' before you leave. A lot of people find that going back to the hotel for the hottest part of the day, really helps with energy levels. Hit the parks in the morning (I'm guessing your little one will be up then, anyway) then go on until lunch; go back to the hotel for naps / cartoons / a swim in the pool; then head to the parks for the evening entertainment. Also, get everyone to write a list of their 'must dos' so that even if you don't do everything, everyone goes home happy.

Hope this helps a bit, and do come back to us with any questions. Also, if you want to chat to others with invisible illnesses, there's a good community over on But You Don't Look Sick .

Have a wonderful trip!

 

[jmartinez1895]

I agree with onelittlespark about renting an EVC or evnen gettign a wheelchair if you are not comforatable operating an EVC. I just wanted to remind you to be sure and set a watch or something so that you do not miss a dose of medication. it is very easy to lose track of time. If you need to you can store medications hta need to be kept cool at the first aid station and if you begin to get very tired or have alot of pain and need a rest you can stop by the first aid station and rest. THey have private areas with cots. I hope that this may help you out some. Have a great trip.

 

[alisonslp]

Heather,

I have had JRA for many years and lately it has really affected my feet. Currently on Enbrel but it doesn't completely do the trick. Lets me live my regular modified life, but big events are usually tough so I was really scared about my trip in April. I have three children - 8,8,6 and it was their first trip. Very scary thought for me to do all that walking. I debated getting an electric cart but I felt that it would really be difficult to maneuver around the crowds. In the end, I asked my Rheum's advice and he recommended a pred. pack - two actually. It worked like a charm. I started the packs (double dose) 2 days before the trip because we had a long car ride here (10 hours in one day). The prednisone helped keep me limber and gave me an extra energy boost I needed to keep up with the kids.

We used the fast passes as much as we could. We did not stand in any long lines, though sometimes we had to wait for shows and that was hard on my feet. I tried to sit as much as possible during these waits.

I discussed my limitations with the kids before each day to remind them that we would get to everything they wanted to but we would need to pacce and walk slower. No running. DH took them to a few rides when I really felt I needed to rest. We hung out at the pool quite a bit, which helped too - emotional boost...

We went back in July for a baseball tournament for my son - 10 days. That was stretching my limits. Too long of a time to be the energizer bunny, even though I was being conservative. The long walk to the fields at WWofSports early in the morning was not a good start to my days. But without the pred packs, it would have been much worse.

We are planning one more trip nov 16. This time I am feeling much better than I had the last times - I have lost 20 pounds and the RA is in better control. Still - I will be taking the pred packs again to be safe.

You can ask for a special card that allows you to use the wheelchair lines. Many times there are seats there for you to wait. This doesn't usually let you get to the front of the line. And sometimes the wait is longer than the regular line but if you need a place to sit while you wait, it may be worth it.

I highly recommend planning your trip so that you are visiting the parks on slower days. There are a few websites dedicated to tour guidelines that you can print out showing which parks are the best for which days and hours. Not only is it easier to get on the rides during slower days, you won't be jostled around in the crowds, which can be really hard on hurting joints.

One more thing - pack a backpack with meds, water, snacks, wet face cloth, any braces that might help, and your favorite rub-on cream. You can take your pack on almost every ride with no problems - unlike most other amusement parks. Have one of your older kids be responsible for the backpack - don't try to carry it yourself. Even if it is light, it will cause unnecessary stretching of muscles along your back and abdomen.

hope that helps!

alison

 

[katmittens]

I have had RA for a little over 13 years. I have been doing better than ever mainly because I do not work anymore. It has taken away so much stress in my life. I am now on SS Disablity even though sometimes I am not happy about it and wish I could work again, I know I can't. I too take a Prednisone Pack with me on my trips. We drive and overall our trip lasts for about 12 days. I usually take it once we arrive. Sometimes I have waited until we were there to see if I needed it and then it was too late, and did not seem to work as well.

About two trips ago I had a very bad problem with my pelvic area. I had fractured my pelvis and was on my way to getting better after being on crutches. We went to Disney and I did well until the last nite and after walking around Epcot I started to hear a terrrible noise like bones cracking. My DD and DS went and got me a wheelchair and pushed me around the rest of the nite. I was OK but I was scared that I really broke something. I too try to take it easy. Sometimes I feel so good I outwalk DH and DS and DD. My kids are older 25 and 22 so they are understanding.

I too have terrrible problems with my feet. I will eventually need surgery on my right ankle, it is turned in very badly. I have a hard time getting shoes to fit. I feel for you with younger kids. It is a bad disease, but it has made me a stronger person and a more forgiving person. I look at life different than before and enjoy every minute I can. Good luck on your trip, have fun and take it easy.

 

[Simba's Girl]

I appreciate the tips.

One thing I will do before I go (and we are 2 + months out) is to discuss the fact that I may need help with DH. Bless him but he is one of those 'you don't look sick' types and I'm not apt to discuss or show my discomfort easily.

The ECV idea is a good one, but I am a stubborn gal, and I may decide a massage later on in the trip will be a better use of my funds (those things are $$$-WHEW!). And like I said, I am stubborn so the chances of a wheel chair are slim but I know the opportunity is there-if need be.

Predpaks-another good idea, however pred turns me into something that nobody wants to be around pretty quickly. Granted so doesn't pain and big time fatigue. I will discuss options with my doctor and see what she has to say. I don't see her for a regular apt till my trip is over-so I'll shoot her an email.

I also have problems with my feet, which were the first area to show symptoms, way before I was ever dx. My right foot has a fairly common deformity and luckily they aren't talking surgery for that. They are however talking surgery for my elbow which I have not had normal range of motion in for many years. Enbrel has changed my life, and may save me from said surgery so we'll see.

Has anyone used those thermacare heat wraps? Any other comfort measures (ie-non-medical or holistic)?

Because this is me in-real-life

Heather

 

[OneLittleSpark]

I completely understand your reluctance to get a scooter - the use of any mobility aid is a hard thing to stomach - but please do give it some consideration. If you scoot around the parks, you'll be able to keep up with (and likely out-pace) your family, and not have to worry about your pain and energy levels.

As an idea of the distances walked in Disney, pick somewhere about 3-4 miles from your house. Do you think you could walk there? If so, could you walk back again in the same day? Could you do this every day for the length of your trip? If you can, then you should be OK on your trip, as long as you look after yourself; if not, you might need a little extra help. I'm not saying this to try and scare you, it's just that I've tried 'toughing it out' at Disney without a wheelchair before and it didn't go well. This was before I got full-blown Fibro, and I finally 'broke' in Norway, where I sat on the floor close to tears while the lovely store manager went and got me a rental wheelchair. Not so much fun

Also, you don't have to let it be a dull thing - a lot of us here like to 'pimp our rides' with tinsel, ribbons, signs, feather boas, lights or anything else you fancy. It's always won me a lot of positive comments with CMs and Guests alike!

If you decide not to get a set of wheels, may I suggest you take phone numbers of some local rental places, just in case?

Some drug-free treatments that I find help are hot-water bottles or wheat bags (the former would be easier to use away from home; ice packs (not so much for the regular Fibro pain, but sometimes for the randoms); and TENS machine units. I've got a little battery powered unit that clips onto my hip, and trails the cables to my ankles (one of my more troublesome areas). You might want to take some surgical tape with you if you go for this, so you can keep the cables from tripping you up (last thing you need on your holiday is a nasty fall!). When we were at WDW, I found the hotel hot-tub at the end of the day to be absolute heaven - it just untied all my knotted muscles and made everything feel soooooo much better. Also, make sure you get a good night's sleep every night, so you can 'regenerate'. I find that herbal sleep-aids help me, but I know they don't work for everyone.

However you decide to play it, I hope you have a great trip!

 

[alisonslp]

I have used the thermacare packs but don't find them too helpful. We take a moist heat electric pad with us. My twins are in baseball and gymnastics, both of which cause aches and pains so we always have the pad handy for them and me. Rice in a sock, microwaved for 2 minutes works like a charm too. I like the fact that it molds to whatever joint you need it too. And very portable. You can even take it to the parks and bring it to the first aid stations. I'm sure they have microwaves close by. Also - they have ice packs available if you need them. Most of my joints stiffen and spasm when I use ice so I avoid it.

Since your feet are a big problem, definitely use the pool, hot tub, and/of bath tub every day after your walking. REALLY helps! calm the swelling.

I have tried different types of foot braces but with the extensive walking, they tend to make my feet feel worse as they swell under the pressure.

One more thing - plan out your day so that you are not walking back and forth all around the parks. If you know what you want to see then make map of your shortest possible route to hit them all.

Oh, and remember to be proactive. Even if you are feeling really good, ice or heat your joints daily - take plenty of rest periods as well. You won't know you did too much until it's too late and you might be ruined for the next day or two...

alison

 

[scroot]

Don't know if/how your upper body is effected. DW has RA pretty much all over. She finds a conventional scooter with handlebar style controls to be very hard to deal with as it causes upper body aches and pains. So far at WDW we have opted for a manual chair with me pushing. If you get upper body pain and stiffness a scooter could make that worse.

 

[sharadoc]

Don't know if/how your upper body is effected. DW has RA pretty much all over. She finds a conventional scooter with handlebar style controls to be very hard to deal with as it causes upper body aches and pains. So far at WDW we have opted for a manual chair with me pushing. If you get upper body pain and stiffness a scooter could make that worse.

Very good point. I have it pretty bad in my shoulders and I find that I should steer with one hand at a time, so the other arm can rest.

But going back to the original point, I resisted the scooter and finally got one last trip and it was a world of difference. But I've had the arthritis for 30 years or so, and unfortunately it's too late for me and the newer drugs. Celebrex is the best I can do now.

My family was thrilled at the vacation with the scooter. They didn't have to stop constantly for resting or pain. I didn't have to gauge my days by distance between benches. It was wonderful.

To the OP - I say try your best, but know that the scooters are there for you. I would recommend getting them in the park, but walking outside the parks. Then if you take a Disney bus, you won't have to worry about being loaded while on a scooter and you'll be a bit freer.

Do you have a handicapped placard and will you be driving to the parks? If so, beware of the handicapped parking at the Magic Kingdom. It's a pretty far walk, since they assume the handicapped person is in a wheeled device. If you do drive to MK, I recommend regular parking and the tram, or valet parking at a monorail resort (GF is the easiest). With a handicapped placard, you are able to be dropped at the door and valet parking is free. Just remember to tip well!

Take care and good luck.

 

[Simba's Girl]

Back again for an update

Prepping for another trip!

We had a wonderful time staying at PolyCL! I think being on a monorail resort really helped with energy. Always went back to room and rested. Did not need to rent an assistive device.

Updates since last trip: New med worked until summer 2011, have tried many more since and on a wash-out period from Actemra before trying Xeljanz next month. (need some magic here ) Came very close to having a total elbow replacement in Jan, but my 3rd synovectomy-this time with removal of the radial head seems to be enough at the moment. Have not been feeling great lately, incredibly tired & quite sore. HOWEVER despite my RA I was able to complete a triathlon in September 2011, run over 500 miles in 2012 and swim a 35 minute mile in 2012. So it hasn't been all bad.

Our next trip is in August 13! We are doing a split stay between YC (imm family only) and SSR GV (ILs + SIL's fam). Based upon the way I am feeling physically at the moment, I am preparing myself that I may need to make use of either a wheelchair or ECV this time. I feel like even though I am able to continue to push myself and be active for my body, albeit not nearly as much as I was last year-it is not worth what I pay for in complete and utter exhaustion and pain- while on vacation. I get quite grumpy when sore and exhausted and don't want to bring my co-vacationers down. While I may not need help everyday (or at all if this new med works), I am thankful it is there.