New to this, anxious about upcoming trip

[MoonFaerie]

I haven't fully processed my new reality. 2 years ago, I was running half marathons and feeling great. Until suddenly I wasn't. In the past year, I've gotten several diagnoses - kidney function declined to stage 2 kidney disease, hypothyroid, inappropriate sinus tachycardia, pseudotumor cerebri/intracranial hypertension, fibromyalgia, and RA.

My husband and I have an adults only anniversary trip planned for Dec, 8 days. I've booked us an accessible room because I really think I'll need the bars in the bathroom, esp with that long of a trip. Except now I feel guilty about booking it because there are probably people that need it more.

I'm pretty wary of renting a scooter. Dizziness is a symptom that comes on quickly, and I'd be so worried about trying to get on/off the bus or accidently bumping people. I'm hoping I'll be okay with just a cane.

I will need to bring a coccyx pillow. I assume that won't be an issue for shows. What about on the Safari? I really can't manage that long on a hard surface.

We'll be taking it as slow as I need. We're planning on using evening EMH to help extend Park time, since I have to limit time in the sun thanks to the RA meds.

I'm also somewhat concerned about going to Disney while on an immunosuppressant. Besides washing my hands a ton, does anyone have tips ton avoid getting sick?

 

[minnie mum]

I would think that with your various diagnoses, and with fatigue being a factor, some type of mobility device will be essential. If you're concerned that you won't be able to safely drive an ecv, then consider renting a wheelchair. You can sit on the pillow for added comfort while in the chair. I think you might have to check with the CM at each ride entrance to see if you could use the pillow on the rides. It could be a safety thing on some of them. If your DH isn't able to push you in a chair, then consider a rollator, so you'll always have a place to sit in the parks.

I had a few trips to WDW on immunosuppressants. I was careful to keep my hands away from my face, handwash frequently, and use a sanitizer. I had no problems. Maybe avoid the buffets though.

 

[scdak]

OP - I understand your feeling about booking an accessible room "because others might need it", I used to feel that way but as I get older(56) with more issues I realize that from a safety standpoint I can't NOT book it or I risk falling, and that would be far worse! So now if I can book a room to meet my needs I do and I don't fret about it. If I don't book an accessible room then I travel with a grab bar that uses suction to hold it securely to the shower wall to ease my mind and make it safer to get in/out of the tub/shower combo, it weighs next to nothing and comes in 2 sizes and I assure you........they stick so well I have a hard time getting it the wall sometimes!

Are you worried about driving the scooter due to dizziness or just having to drive off and on the bus if the dizziness occurs? If its just the bus issue then maybe your husband could drive it on - I did that for my mother one trip. And although I know that the drivers are not supposed to help, I found them very helpful , they could "free wheel it" on/off the bus far faster then I could drive it or park it! My last trip down I had to use a scooter for 2 weeks due to a stress fracture in my foot and I didn't worry about bumping anyone, I drove slowly, avoided crowds when possible such as park opening and closing - we would just sit and wait for the crowds to thin a little instead of getting in the crowd, it didn't slow us down more than a few minutes. I found that people are NOT watching where they are going, stop short in front of you, walk in front of you etc but I never bumped anyone due to my driving........they bumped into me, again easily avoided by going slowly when people were around and waiting for a short time before entering and exiting the park.

Have fun, it sounds like you know your limitations and are able to adapt your day by taking it slow, avoiding the sun etc. Disney is a great place when you have physical limitations and I didn't encounter any CM that wasn't pleasant and helpful.

 

[MoonFaerie]

Are you worried about driving the scooter due to dizziness or just having to drive off and on the bus if the dizziness occurs?

Both. If a cold front comes through or it rains or anything like that, I'm pretty much guaranteed a headache, and my IIH headaches come with dizziness, poor balance, and, if I'm lucky, blurry vision. I could have my husband take the ECV then, but I'd be left walking without help.

The controls are on the handle bars, right? So would a wrist brace be a problem? I usually just wear them at night, but if I'm having a flare, I'll at least need the left one during the day.

 

[SamIAm8]

I have used an electric wheelchair for 26 years because of a SCI. I think you should stick with a handicapped accessible room. Not only do they have bars but often they have showers with zero level entry, handheld shower heads, and built in shower benches.
As for whether you should rent an ECV, it depends. Personally I hate the bus with a passion. I always feel like everyone is starring at me and every once in awhile some jerk will say something rude. I stay in MK or EPCOT hotels so I don't have to go on a bus except to go to AK. I would say try w/ the cane and rent a scooter in the park if needed.

 

[SueM in MN]

Both. If a cold front comes through or it rains or anything like that, I'm pretty much guaranteed a headache, and my IIH headaches come with dizziness, poor balance, and, if I'm lucky, blurry vision. I could have my husband take the ECV then, but I'd be left walking without help.

The controls are on the handle bars, right? So would a wrist brace be a problem? I usually just wear them at night, but if I'm having a flare, I'll at least need the left one during the day.

Given those things, I think you would be safer with a wheelchair rather then an ECV.
You could sit in it and have someone else push you, park it and walk for a while or push it yourself for support while walking.
If you rent from one of the offside places and decide to use sm ECV in the park, you could leave the wheelchair at the rental area and have them hold it for you.

I have used an electric wheelchair for 26 years because of a SCI. I think you should stick with a handicapped accessible room. Not only do they have bars but often they have showers with zero level entry, handheld shower heads, and built in shower benches.
As for whether you should rent an ECV, it depends. Personally I hate the bus with a passion. I always feel like everyone is starring at me and every once in awhile some jerk will say something rude. I stay in MK or EPCOT hotels so I don't have to go on a bus except to go to AK. I would say try w/ the cane and rent a scooter in the park if needed.

If you think you need a roll in shower,must needs to be part of your reservation (not a request - an actual reservation for an accessible room with roll in shower.
Some of the accessible rooms have tubs with grab bars.

 

[MoonFaerie]

Thanks. I was leaning more towards a wheelchair. Now I just have to decide if I want to rent one from off site or from Disney. We're booked in a preferred room at AS Music, so I don't expect to need it at the resort. Though I may be using the pool some, if water PT turns out to be helpful. We've got plans to head to Disney Springs one night just for dinner. Oh, but those plans involving walking from the Candlelight Processional to Y&BC to catch a bus. Hmm. Maybe I'll go ahead and make a reservation and see how I respond to meds and PT. (I'm only 4 weeks post total hysterectomy, so I haven't been cleared by my surgeon to get in a pool yet.)

I did book the accessible room with the regular tub. I don't need roll in/zero entry. As long as I have bars, on case my balance is wonky that day, steps aren't an issue.

How do wheelchairs work at TS restaurants? Can I leave it out in the stroller parking and sit in a regular chair?

 

[SueM in MN]

Thanks. I was leaning more towards a wheelchair. Now I just have to decide if I want to rent one from off site or from Disney. We're booked in a preferred room at AS Music, so I don't expect to need it at the resort. Though I may be using the pool some, if water PT turns out to be helpful. We've got plans to head to Disney Springs one night just for dinner. Oh, but those plans involving walking from the Candlelight Processional to Y&BC to catch a bus. Hmm. Maybe I'll go ahead and make a reservation and see how I respond to meds and PT. (I'm only 4 weeks post total hysterectomy, so I haven't been cleared by my surgeon to get in a pool yet.)

I did book the accessible room with the regular tub. I don't need roll in/zero entry. As long as I have bars, on case my balance is wonky that day, steps aren't an issue.

How do wheelchairs work at TS restaurants? Can I leave it out in the stroller parking and sit in a regular chair?

You can if you want to, but be aware of rain.
If you would like, you can bring it in, transfer to a chair when your group is seated and the CM can move it to the side for you. Discuss when you check in.

 

[J'aime Paris]

Hi MoonFaerie! I'm sorry for your recent health challenges, and I hope your anniversary trip is wonderful!

Sorry to hijack the topic a bit, but I was wondering if you'd share a bit about your total hysterectomy experience.

I've had "female" issues almost my whole life. I've got irregular cycles, PCOS, endometriosis, fibroids and a tilted uterus. I'm miserable just about every day with the myriad of side effects these issues bring upon me.
My gyn tried surgery for the endo and did an ablation about 2 years ago. I had minimal relief from some of the symptoms.

Long story short, I'm looking at a total hysterectomy at the age of 44. Quite honestly, it scares me and freaks me out. I'm not in menopause yet, so I'm concerned that I may be opening a new box of problems with hormone issues. I dont personally know anyone who has had a total hysterectomy, so there is no one to bounce questions off of.
If you'd be willing to share that would be great---if not, I totally understand.

 

[MoonFaerie]

Sure thing, I have no problems talking about my hysterectomy. I'm at DD's bball practice and about out of data, so I'll reply tonight or tomorrow

 

[book_junkie]

Thanks. I was leaning more towards a wheelchair. Now I just have to decide if I want to rent one from off site or from Disney. We're booked in a preferred room at AS Music, so I don't expect to need it at the resort. Though I may be using the pool some, if water PT turns out to be helpful. We've got plans to head to Disney Springs one night just for dinner. Oh, but those plans involving walking from the Candlelight Processional to Y&BC to catch a bus. Hmm. Maybe I'll go ahead and make a reservation and see how I respond to meds and PT. (I'm only 4 weeks post total hysterectomy, so I haven't been cleared by my surgeon to get in a pool yet.)

I did book the accessible room with the regular tub. I don't need roll in/zero entry. As long as I have bars, on case my balance is wonky that day, steps aren't an issue.

How do wheelchairs work at TS restaurants? Can I leave it out in the stroller parking and sit in a regular chair?

Hi!
As to the wheelchair, rent one from offsite. You can have them deliver it to the resort and pick it up from there as well, and there are a variety of options- I've seen ones with fold up/down canopies to shield from the sun. By renting it outside the parks, you'll also have it if you need it for the resort, to/from the buses, and anywhere else. And you can clean it as many times as you need to without worries. Disney's chairs are restricted to the parks- if you needed one at the resort you'd be stuck, and the All Stars can be pretty big, especially if you're tired.
My husband has immuno issues and deals really well in the parks. We carry hand sanitizer and wash hands constantly. We're also aware of the people around us- if someone is coughing or sneezing, we'll wait for them to pass or I'll block and make a bit of space in line so he's not right up next to them. We also sanitize the ride bars with sanitizer- a quick squirt in our hands then rubbing it down before pulling it down doesn't hold anything up.
When we were traveling, we would see his Drs and make sure to have emergency supplies of any meds he took when he'd get sick. The local urgent cares can be good, but trying to explain what you need then finding a pharmacy that carries it on vacation is crazy stressful when you can just have a just-in-case supply. You know your symptoms and know when you're getting really sick vs a flare.
Definitely be aware of doing too much and taking in enough water- it's a big area and even in December you can get dehydrated easily.

 

[mamabunny]

You might consider a WonderGel (or similar) cushion in place of an inflatable cushion. And, if you go with a wheelchair, bring along a pair of inexpensive bike gloves for the "pusher" to help prevent blisters on their hands.

 

[MoonFaerie]

You might consider a WonderGel (or similar) cushion in place of an inflatable cushion. And, if you go with a wheelchair, bring along a pair of inexpensive bike gloves for the "pusher" to help prevent blisters on their hands.

I have a foam cushion, not an inflatable one. My girl child plays basketball year round and runs track, so I spend A LOT of time on bleachers. I've had a stadium chair for a few years, but I had to add the cushion this spring.

 

[Realfoodfans]

I send hugs to you and hope you have a great trip! I have health issues but as yet manage ok but I'm aware my dizziness and fatigue is getting worse so I'm really hoping you'll post as to how you cope. I always take emergency meds in case of a flare up while travelling. I have low immune system and have sometimes resorted to the very fine gauze gloves- they are sold for if you have eczema- to avoid continually hand washing - and then washed them or thrown them away. Take care and do post on your progress!

 

[Pridemom]

I haven't fully processed my new reality. 2 years ago, I was running half marathons and feeling great. Until suddenly I wasn't. In the past year, I've gotten several diagnoses - kidney function declined to stage 2 kidney disease, hypothyroid, inappropriate sinus tachycardia, pseudotumor cerebri/intracranial hypertension, fibromyalgia, and RA.

My husband and I have an adults only anniversary trip planned for Dec, 8 days. I've booked us an accessible room because I really think I'll need the bars in the bathroom, esp with that long of a trip. Except now I feel guilty about booking it because there are probably people that need it more.

I'm pretty wary of renting a scooter. Dizziness is a symptom that comes on quickly, and I'd be so worried about trying to get on/off the bus or accidently bumping people. I'm hoping I'll be okay with just a cane.

I will need to bring a coccyx pillow. I assume that won't be an issue for shows. What about on the Safari? I really can't manage that long on a hard surface.

We'll be taking it as slow as I need. We're planning on using evening EMH to help extend Park time, since I have to limit time in the sun thanks to the RA meds.

I'm also somewhat concerned about going to Disney while on an immunosuppressant. Besides washing my hands a ton, does anyone have tips ton avoid getting sick?

We are here now. My daughter and I take immune suppressants for Juvenile RA. Just wash your hands often and before eating. Taking a mid day break will help with fatigue. You might check into renting an ECV from a rental company; some have sun canopies which would be great for you. After a couple of days of walking in the parks, I had to have a down day to rest. Listen to your body, ask your doctor for a prednisone pack to have in case you need it, rest in the afternoon heat, wear a shirt with UV protection, have an ECV rented, and wash your hands. Those are my tips after living with JRA 40 years.

My daughter has worn her Columbia long sleeve UV shirt when in the parks with 50 upf sunscreen. She is ultra pale and can burn in the moonlight, and her meds make her photosensitive. After a week, she is still burn free.

 

[Bianca and Bernard]

I haven't fully processed my new reality. 2 years ago, I was running half marathons and feeling great. Until suddenly I wasn't. In the past year, I've gotten several diagnoses - kidney function declined to stage 2 kidney disease, hypothyroid, inappropriate sinus tachycardia, pseudotumor cerebri/intracranial hypertension, fibromyalgia, and RA.

My husband and I have an adults only anniversary trip planned for Dec, 8 days. I've booked us an accessible room because I really think I'll need the bars in the bathroom, esp with that long of a trip. Except now I feel guilty about booking it because there are probably people that need it more.

I'm pretty wary of renting a scooter. Dizziness is a symptom that comes on quickly, and I'd be so worried about trying to get on/off the bus or accidently bumping people. I'm hoping I'll be okay with just a cane.

I will need to bring a coccyx pillow. I assume that won't be an issue for shows. What about on the Safari? I really can't manage that long on a hard surface.

We'll be taking it as slow as I need. We're planning on using evening EMH to help extend Park time, since I have to limit time in the sun thanks to the RA meds.

I'm also somewhat concerned about going to Disney while on an immunosuppressant. Besides washing my hands a ton, does anyone have tips ton avoid getting sick?

For the immunosuppressants, you will want to avoid using drink towers, and ice in drinks. Restaurant ice machines and drink towers are not cleaned as well as one would hope. Drink bottled/canned drinks only.
At buffets, you can get your food plated before the food comes to the line. You have to contact Disney Dining and have it noted, about 30 days out (per the dining team).
lots of hand washing. Maybe some handwipes and hand sanitizer (DH uses both).
DH can't eat any fresh fruits or veggies when we're out; they have to be washed for 3 minutes under warm running water, and most places can't guarantee that occurs. So, he skips the salads and asks for no toppings on the burgers, and no garnishes at the nicer places.

 

[MoonFaerie]

Well for now, I'm dealing with a setback. I'm dealing with a pretty major allergic reaction to the plaquenil. I'm not sure what the new plan will be yet. I'm on a high dose of steroids to suppress the allergic reaction, which aside from being moderately emotionally a mess, I feel amazing. No pain at all. I'm actually gonna miss the steroids.

 

[Pridemom]

Well for now, I'm dealing with a setback. I'm dealing with a pretty major allergic reaction to the plaquenil. I'm not sure what the new plan will be yet. I'm on a high dose of steroids to suppress the allergic reaction, which aside from being moderately emotionally a mess, I feel amazing. No pain at all. I'm actually gonna miss the steroids.

I also cannot take plaquinel. My entire mouth and throat were covered in mouth ulcers. It was misery.

 

[happymommy]

My daughter has similar symptoms as you - she was diagnosed last year with Ehlers-Danlos Syndrome.

We find a wheelchair rental from an outside company at Disney to be the best thing. I can push her, but she can get up and push or walk some too. She doesn't use one anywhere but Disney - no way she can handle the miles we cover, even taking it slow, without horrible ankle, leg, and shoulder pain.

We are booked in a room with a roll in shower for our next trip, and also next spring break, at Pop Century (I actually can't decide that are Swan so have both booked right now). The shower will be better than borrowing a shower seat from housekeeping (which we did the last couple trips) for a regular tub shower. The seats are hit or miss - last time we got one it wasn't very nice. The roll in shower will have a seat built in, and hand held shower. That way she can sit and shower (she does at home), since it can make her dizzy to stand long in a shower. I would recommend getting this category for sure. It will make is so much safer to shower I think!

Even when she's old enough, I think she'll prefer a wheelchair to a scooter. It's easy to fold it up for the bus ride (unless she is just wiped out - last trip on night she stayed in it and they tied her down - she fell fast asleep on the ride back to AKV).

I'd double check which kind of accessible room you booked. If you can get a roll in shower, it may be nice for you.

Hope you have a wonderful trip!

 

[Nevada Jen]

The fact that you think you are only "moderately emotionally a mess" made me laugh outloud. Just FYI, others around you may not perceive it that way You might consider getting your own scooter or permanent wheelchair. It sounds like it might make your life a lot easier (imagine, no bleacher seats ever!). That said, if you are going with a wheelchair, definitely rent from offsite. They are a zillion times more comfortable for the sitter and easier on the pusher. If you are flying, you might even consider renting at home so you have it in the airport. Walking and carrying things that you do not normally do through the airport stresses parts of the body not normally stressed. Good luck, you will get past the set back and have an awesome trip!