New to this Lupus Dx

[mfd25wife]

I was just diagnosed this past week and started prednisone shots then pills for 6 months. I did a search, and most threads were from 2+ yrs ago. We've been to WDW several times, but this one worries me a little. We aren't canceling since it is our anniversary trip. But, I am in a flare. The doctor said my body is kicking it's own butt. Our trip is in ~3 WKS. I'm scared this flare will not go into remission in time. The doctor said it could take a while. Fortunately, we are flying so I won't be in a car so long. My DH and DD and a friend have been walking/hiking short distances slowly to help use the joints and muscles. I hope that will help.

For those experienced luppies, can you tell me what you've done to enjoy WDW as much even in a flare or to prevent one. I don't know about the GAC for lupus. I've had one once when we had a wreck on the way to WDW and I broke my neck in 20 places and 10 ribs. When I was released, they had me in a hard neck brace and strong pain meds. DH did get a wheel chair that he pushed since NO ONE wants an ECV driven my someone on pain pills. I will be open and say there were special accesses given to me because we couldn't afford for anyone to bump my arms, ribs, or arms, or jostle the chair because it was c1 & C2 broken. The CM's were great about protecting me and my chair. I will always love them for that. But, that was my only experience not being healthy.

What can I expect? If the flare is still there, what do you do to make the trip more comfortable? I do get the discoid rash, but not the butterfly. My flare involves joints, extreme fatigue, and a tingling that is going throughout my limbs and back. This trip is just DH & I so we can do whatever is needed like resting. I'm usually not negative, but this pain seems nonstop and the tingling is uncomfortable. I do have some pain meds and muscle relaxers that knock the edge off at times. Is there anything you recommend? We are considering an ECV, but not really sure yet. Not even sure a GAC would offer assistance at times.

 

[deakam]

The advice I have for you is to relax. Stress brings on flares. Do some deep breathing and stretching exercises. Yoga works well for me. I have been in remission for quite some time. I do not deal with stressful situations. I walk away. You are making yourself sicker by stressing over your vacation. Do what you can and enjoy yourself. The scooter might help if you are suffering from stiff joints and it also might ease some of the pain. Go ahead and get the GAC and use it when you have too. Don't push yourself. And have fun.

 

[WheeledTraveler]

I don't have a lupus diagnosis, but it's something that my doctors regularly kick around as an idea so I'm very familiar with lupus symptoms. I have other autoimmune conditions and other chronic health conditions with joint pain and fatigue as major symptoms, as well.

I would highly suggest an ECV or wheelchair. If you feel safe to drive an ECV, that's what I'd go for because it will give you a bit more freedom and means no one else would have to push. You can always park it some places and walk at times (I know sometimes too much sitting can stiffen up joints and cause more pain). The lower average distance walked at WDW is about 6 miles a day. That's not going at commando pace (people who do that can do up to 12 miles a day). The majority of that distance is between rides and the majority ride queues don't have a way to shorten their distance anyway. Having an ECV also means you'll have a seat in queue when you use it (I'd highly suggest at using it for Soarin' and the Safari because those both have queues that are about a 1/4 mile one way with no way to shorten that distance). While you may manage to do 6 miles once, can you really do it multiple days in a row? It's far better to save energy and pain and use the mobility aid. In general it won't shorten wait times and for a few rides may lengthen the wait time for various reasons.

I'm not sure how much a GAC can help you. WDW says that guests who have mobility and stamina issues should rent a wheelchair or ECV. There aren't places to sit in lines if you don't have a mobility aid with a seat and no way to meet your party when they get to the front of the line. If you don't end up using any mobility aid, the only thing I can think of is if you need to avoid stairs a GAC can be issued to avoid stairs in the queues that have them. If you even have a cane, however, that counts as a mobility aid that should mean that a GAC is unnecessary for CMs to know you need to avoid stairs. You don't need a GAC for this, but most rides with moving walkways can have the walkways slowed or stopped. The only rides where they cannot be slowed or stopped are Peter Pan and Tomorrowland Transit Authority. (TTA also does not have any sort of wheelchair access to the ride, but PP has an accessible entrance for those who can still transfer within the amount of time allowed.)

Talk to your doctor about pain medications and if there's something you can bring if you need extra pain control. He may also have other advice for traveling with lupus. Remember it's far easier to keep your pain level lower before it gets bad than it is to lower your pain after it's gotten higher. If the pain meds do make you fuzzy brained, it's probably better to get a wheelchair than ECV, but if not, I really do think you may be better off with the ECV.

Make sure to drink loads of water, use sunscreen, and try to keep to cooler times of the day. Make sure to wear a hat and loose clothing, preferably with longer sleeves to help reduce any issues from photosensitivity. You may also find it useful to alternate between attractions outside and those inside with air conditioning. Most queues are shaded and/or have air conditioning so that should be helpful. It may be worth getting a cooling bandana or Froggs Toggs neck wrap if you happen to be temperature sensitive with heat.

You can rest/take a nap in First Aid if you need to and can't get back to your resort. It may help if you plan to go early when it's less hot/fewer long queues, take a break after lunch to nap/rest around your resort during the hottest part of the day, then return in the late afternoon/evening if you feel up to it. It sounds like you have a realistic idea in terms of not pushing. If you can, you might even want to consider planning in a day (or more) as a rest day between park days. You can use that day for quieter activities around your resort or for a couple hours at DTD or something else that isn't as much energy as going to the park. Spending time in the pool and/or hot tub should also be helpful. Water is really good for low-impact exercise and supporting joints to give them a rest.

If you need to, also, book assistance for the airport. MCO is much bigger than you may realize and it's silly to waste energy on the airport rather than conserving it for fun at WDW. I don't know how big your home airport is, but it may be worth it to consider getting assistance there as well. Worst case scenario you end up not using it or you end up using it and then have even more energy saved. During the flight, you may want to try walking around a little bit. That'll keep your joints from stiffening and may help if you have any issues with joints swelling due to fluid or pressure changes.

If you don't know The Spoon Theory ( http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ ) you might want to check it out. It may also be useful to show to family and friends. There's no way for them to full understand if they don't have chronic illness/health issues of their own, but it's a good analogy to explain what it's like when it comes to energy usage.

WDW is one of the best places to travel when you have health problems. It's one of the most wheelchair/ECV accessible places I've been and the majority of CMs will do anything they can to help, as you experienced during your trip after your accident. I think you'll be pleasantly surprised on how well things go. Also, being on vacation can reduce your stress in ways that should help your flare.

The person who suggested some meditating or similar to work on reducing stress has a good idea in general. Also, not WDW related, but yoga is a good exercise for folks with stiff swollen joints, as long as you keep to the types that aim for gentle movements. I wouldn't suggest doing Bikram. Exercises in the water are also good, although, I wouldn't suggest starting anything like an aqua-aerobics class in the middle of a flare.

I hope some of this helps. There are plenty of folks here with lupus. The lack of recent threads about it are probably more because the older threads were pretty good (IIRCC) and most of the general advice isn't going to change no matter how WDW changes.

 

[mfd25wife]

Thank you so much for these posts. It definitely helps. I had not thought of yoga and how much stress may be affecting it more. I will add swimming since I have access at the wellness center. The Dr ordered PT to try to help me, but I have not started that, yet.


I will also continue reading the old posts as I'm learning as much as I can. I keep worrying that I will mess up the trip for DH because of this.


I will read the link posted. I don't think people understand much, but I can't expect them to until I can explain it better. I've posted on FB about walking, which makes them think it is not that bad. They don't understand that I am supposed to in order to help my joints especially since they started the prednisone.

 

[Nature Mom]

I am sorry for your recent diagnosis. I was diagnosed with Lupus in 2001.

The PPs have listed some very good tips for you. Since it is just you and DH, I think you will be able to have a great time without overdoing it. I have traveled to WDW during flares before and even though I ended up with days of park tickets not even used, I still was able to have a good time. Listen to your body but be proactive. If you are beginning to feel tired, you have already done too much. Rest before you are tired. Take extra time to just float in the pool or a few minutes in the hot tub to ease the joint pain (this is my ritual every single night before bed). Definitely get a GAC and use a scooter if needed. I find that when we have traveled and I was in a flare, I watched way more shows and really utilized my resort's amenities. Because your immune system is already compromised, be sure to wash your hands often, use any antibacterial products as needed and avoid the sneezy, coughy people as much as possible. Limit touching stuff. All it takes is one bad germ and you'll go home worse then you arrived.

I agree with you reading the Spoon Theory. Good read and so accurate. Also, meditation and yoga help me a ton. So incredibly much. Stress really is the absolute worse thing for Lupus, so try to find a way to destress before the trip to lessen the amount of flare you are in. Wishing you the best.

 

[Piper]

I have been dealing with Lupus for 45 years and Juvenile Rheumatoid Arthritis, Scoliosis & Lordosis associated with NF,I for 56 years. One of the things I have learned is to listen to my body. I go early in the morning when there is a lot of shade. I eat an early lunch and then go back to the resort to rest. If I am feeling okay, then I go back again in the evening ( when there is plenty of shade or dark.) When I was younger, I could do a lot more than I can now.

Basically, you need to listen to your body. Don't do "just one more thing" after your body says it is finished for now. If you do that, you will recover much faster and be able to do more. If you let yourself get worn out, you may not recover for several days.

There is a lot more information out there now. Read and educate yourself, but know that every person's Lupus is unique. You may have some of the same symptoms, but then again, you may not. Only your doctor can give you advice tuned to your body.

 

[kuhltiffany]

I've had Lupus for @ 20 years, you've had lots of good advice so far. My only addition is to eat well. When we go I get grocery delivery for lots of fruits, nuts, yogurt, water, etc. so I can snack on healthy foods, protein, etc. It really helps me keep going. A few days of eating fried, white, no grain crap and I feel awful!