Can't eat! Change from FD to RO?

[cassiejo2711]

Help! Final payment due Sat. We are booked at CSR with FD. Myself, DH, Dd(11), DS(9).

Details: I have lupus and it has caused gastroparesis (basically I don't digest food well at all). It is in a flare right now that I had hoped would calm down by our sept 23-28 trip.

When in a flare such as this I have been put on TPN (liquid nutrition through a feed) and do not eat any food by mouth. My dr thinks I will be able to eat here and there, but honestly I've not had any luck with this (we have tried every med, diet, supplement, etc). Liquids aren't the answer. My body just revolts (in the form of vomiting) sorry. Gross I know.

I will NOT be on TPN while on the trip because my immune system hasn't been strong enough to have the risk of an open wound (from needle where port for food is accessed 24/7) The next step is a pacemaker to empty the stomach, but this would be until later in the year.

Because I am basically unable to eat much of anything (For specific medical reasons) I am really second guessing the dining package as a good option for me. I will maybe eat a banana or a tiny cup of yogurt and have that be all for the entire day.

The ADR's we have scheduled are 1900 Park Fare, CRT (kids super excited about this), BOG, and Mama Melrose Fantasmic. The rest would be QS when they feel like it and breakfast in the room before heading to parks. I know this isn't very many TS means and now I am thinking I should call tomorrow and cancel free dining and see if we can get a RO discount and pay OOP for dining based on how little I will be able to keep down. I can and will be able to provide drs notes explaining, but I didn't think they would just let me alone not have a dining plan (I understand the rule, and if you make one exception how do you draw the line).

Or do I keep FD and let everyone else use it and just suck it up that we aren't saving anything based on my inability to use the plan.


I never intended to let it come down to the wire like this. We were hopeful for a turnaround and it just hasn't happened. I am so thankful I am even able to go on a trip this year (last year was all TPN, chemo, antibodies, and sleep) and have been trying to get a vacation planned that allows my kids to forget about their sick mom for a bit. Plus I do not want to be vomiting profusely throughout the trip. My apologies if this isn't the correct board. Since my concern is because of my disease I thought someone here may have an answer.

I hope this makes sense. I'm exhausted (no food=no energy) and already worried about being able to do the parks for short days. I have to rest every day. I even considered seeing if CR was available for the proximity to MK and ease of leaving for a nap, but it is out of our price range.

Any insight would be greatly appreciated. My husband is not involved in the planning at all because of very time consuming projects at work so I have been trying to make this all happen in the periods of time that I feel well and am not running kids to activities (again, blessed to to that this year, so not a complaint)

Best to all of you living with medical issues of yourself or a loved one. It's not easy on anyone, but in the end we are all stronger and more empathic to others. Thanks for any insight you can offer.

 

[Leota]

I'm sorry to hear about your troubles & I hope you pull thru your flare so you will be a little more comfortable on your trip. I have not had to go to TPN but sure do understand not being able to eat & digest...

If it were me, I'd look at the RO discount & compare it to what you think the rest of your family would really eat & be happy with to see how it shakes out. I think given that you really don't have a huge amount of TS planned and you can't eat, you may find it's better to do RO. I'm not a big fan of the dining plan tho....

Have you accessed First Aid at any of the Parks yet? They are wonderful. Not just when you are in crisis, but if your energy goes down & you need to lie down for a bit, you can go there. I know when my energy goes down, my stomach acts up, so being able to rest quickly is important. I have also used them to store refrigerated meds & to self-administer injections. The nurses are wonderful.

I have had to use a scooter during a bad spell in 2011... walking thru the Parks would have been completely out of the question. The scooter allowed me to keep up with my family - most of the time. There were times that I couldn't and still can't. We all go into it knowing there are going to be times when I have to stay behind or leave early.... stinks, but it's just the way life is for us. It's easier for me to enjoy what I can do, knowing that there are no expectations for me to keep up all the time. I used Apple & they were very good.

Good luck. I do hope everything works out & you have a Magical Vacation filled with Blissful Memories to tide you over when it's hard.

 

[cassiejo2711]

Thank you for your kind reply. I didn't realize that you could go to first aid to rest so I will definitely know where those locations are! Even though I have gotten pretty good at listening to my body I know I will be pushing it much harder than I have since my diagnosis.

I am going to try to price things out tomorrow. The Mama Melrose fantasmic package was one I got because we had the FD, but it isn't one I feel tied to like the others.

The scooter has been on my mind for months. I know it is necessary. I am 35 and look healthy enough so I dislike the rudeness that is received sometimes for using one. I know I can't let that dictate what is best for my health though.

Have a wonderful evening!

 

[Leota]

Yeah, it does feel a little weird at first.... until I took a bad turn in 2011, I was very active with hiking, snowshoeing & yoga. Going from that to a scooter & handicap tag was a tough pill to swallow. I was pretty visibly ill tho - at the time I only weighed about 100 pounds & I'm 5'7", so I was pretty skeletal.

And here's the thing..... who are you going to see down there that you care what they think? Most people are going to be so caught up in their vacation that they won't even register you as a person.... you are just a scooter & what ever mindset they have about that is on them. It's really none of anyone else's business except yours why you need a scooter & if anyone is rude enough to say something tell them to bug off. Who cares what any random stranger thinks? You & your family know what you have to do so that you can have the best life possible. And most of the cast members are angels who make it possible for you & your family to forget illness for awhile & just be "normal".

Keeping my fingers crossed for you.

 

[Betty Rohrer]

our adopted daughter had a heart attack at 35, granted different medical problem, but she had to use scooter. she got most of her rude comments on buses because she would not hold her young son on crowded buses. she was not allowed medically because she could be shocked from her devices which she had no warning of and would have killed her son if he was on her lap when it went off. she got a mild shock on one bus and the complainer was touching her, should have heard her reaction when she felt it just touching our daughter. do not let the complainers bother you, do what you need to do to have a great vacation

 

[SueM in MN]

A couple of other things to think about -

If you cancel the reservation including the free dining, that doesn't just cancel the free dining, it cancels the entire reservation.

There is no guarantee that there will be any available room discounts, so you could end up canceling a reservation and still paying full rack rate for the room. That would be a loss, because you would be paying out of pocket for food.

There is also no guarantee that a room would even be available. Many of the formerly 'slow times' are not so slow any more , especially since WDW is promoting things like free dining, Food and Wine Festival and the Not So Scary Halloween Parties.

So, my suggestion would be to go, eat what/when you can eat and don't think about what you may have saved if you had not booked free dining.

 

[Bete]

I think you can still utilize your dining plan in a different way and feel good about it. Keep in mind dining credits are in a pool; they are not designated to each individual. Let me first state your CRT reservation will require 2 TS credits per person on the dining plan. This means you are short a meal for credits to use on another day's meal. Your unused credits can go towards another meal for the rest of the family. The Fantasmic package meal at MAMa Melrose is a meal that will count for you because it's part of the Fantasmic package; so, in this case I would order your meal anyway. Then, let others in your party share the meal that is your credit. Everyone can eat a bigger meal there. Order something everyone else will like to share. You can cancel this Fantasmic reservation and go somewhere else where you don't have to use a credit for yourself. You don't have to have a meal and you don't have to use a credit at most restaurants except for special dining as above. Buffets will require a credit, too even if you don't eat. With your current reservations you are not helping yourself on the dining plan. You may have to rethink other restaurants to maximize your situation. Some individuals maximize their use of the dining plan and order the most expensive meals. In that case, you usually exceed the cost of the actual dining plan and you make out even more so on the plan.

As Sue mentioned it's not a simple step to drop free dining and try to apply another discount like a room discount. You don't get to keep your same reservation. If you have done fastpass plus reservations you will lose what you have there, too canceling your current reservation. It may not be so easy to get these same fastpass reservations on a new reservation. You can see what a room discount will get you at this late date, but I would be real sure you can get equal accommodations before doing this.

 

[HopperFan]

I would agree to be very careful about canceling until you have seen and been able to book a RO for sure. I've been looking at that same time frame for RO or Annual Passholder discounts (I believe last day to book on one of them is today) and I've been very disappointed as to what is even left. Bad enough I am probably going to book offsite. You may end up paying the same as your package for room only.

 

[Goofy14sure]

You also may have to pay for the character meals even tho you don't eat

 

[Allison]

You also may have to pay for the character meals even tho you don't eat

I was going to point that out also. You have buffets and packages scheduled that you will have to pay for whether you eat or not.

 

[cassiejo2711]

Thank you, oh wise ones! I had not even considered that I would have to rebook, instead of just switching. FP+ selections are made and we got 7DMT so I'm no messing those up! I also hadn't thought about the buffets and needing to pay regardless. It makes sense and most restaurants outside of WDW would probably charge you as well. I haven't navigated this aspect before, typically when I've been on TPN I haven't be able to go much of anywhere, even just to observe. I am doing so much better and am just happy to be going! I've not done the Mama Melrose Fantasmic package. I booked that for the viewing of Fantasmic specifically, but I'm second guessing everything. This has been incredibly helpful. Sometime the answers are right there and you just can't picture them. I'm thankful for the feedback. With the announcement of HS Frozen activities lasting through Sept I'm sure whatever was left is being scooped up. Thanks again for the help!

 

[shoes99]

My sister has gastroparisis, and has a feeding tube. She lives in FL and even has an annual pass. She uses the first aid stations, as her micki button does leak occasionally and has to be flushed. The first aid stations has curtained room and the privacy she needs to attend to her line. As far as restaurants, we just pick TS locations that are not buffet or family style. She has been on a feeding tube for 10 years, since the age of 50. She still gets dirty looks from people when they think she is too young to be sick and getting special treatment.
As far as your family's free dining, I would stick with the plan and as suggested if you have to , pick more than one signature restaurant to double up on using your credits.
You can have DD and DS share a meal at TS. Just calculate your points/credits wisely. You don't have to order your own entree at every restaurant.
Good luck with whatever you choose.
Off topic, she is an ambassador for the oley organization. www.oley.org.
Its a wonderful national organization for folks on tpn. Great information on their website.
Michele

 

[SueM in MN]

First Aid in each park has a little different areas.
This picture is from Magic Kingdom and shows a semi-private area. The front (where I stood to take the picture) is a curtain.

Epcot and MK have semi-private and private rooms with curtains.

Each First Aid also has some more private rooms with doors - this one is at the Studio.

 

[Bete]

Usually, it's not impossible to change dining reservations; so, you can rebook those reservations.

You may have to try multiple times to get an opening somewhere else, but it is doable. You don't have to give up your current dinner reservations to look for other openings elsewhere.

If you can change then you can cancel your old reservation. With free dining it's harder to come by a new reservation, but not impossible.

 

[cassiejo2711]

My sister has gastroparisis, and has a feeding tube. She lives in FL and even has an annual pass. She uses the first aid stations, as her micki button does leak occasionally and has to be flushed. The first aid stations has curtained room and the privacy she needs to attend to her line. As far as restaurants, we just pick TS locations that are not buffet or family style. She has been on a feeding tube for 10 years, since the age of 50. She still gets dirty looks from people when they think she is too young to be sick and getting special treatment. As far as your family's free dining, I would stick with the plan and as suggested if you have to , pick more than one signature restaurant to double up on using your credits. You can have DD and DS share a meal at TS. Just calculate your points/credits wisely. You don't have to order your own entree at every restaurant. Good luck with whatever you choose. Off topic, she is an ambassador for the oley organization. www.oley.org. Its a wonderful national organization for folks on tpn. Great information on their website. Michele

Thanks for the info! That is a great website and I hadn't seen it before! It is always inspiring to hear how others handle their challenges; especially when I've only been on TPN 8 months and need advice! I had tried mainly looking for support in the lupus communities, but my case is very strange and I haven't found much info.

All my best to your sister and your family. Supporting those who are chronically ill is a challenging job. We do appreciate it!

.

 

[cassiejo2711]

First Aid in each park has a little different areas. This picture is from Magic Kingdom and shows a semi-private area. The front (where I stood to take the picture) is a curtain. Epcot and MK have semi-private and private rooms with curtains. Each First Aid also has some more private rooms with doors - this one is at the Studio.

AWESOME! I had NO idea this was available. Very thankful to know this...I admit to being completely clueless prior to this year. Our last trip was in 2009; before my diagnosis. Thank you for sharing. I showed my husband and he is less anxious now too. I don't do a lot so he and I have been a little concerned about how to manage all my medical needs there. I aka visual person so the pictures are perfect!

 

[cassiejo2711]

I called and spoke to am AMAZING dining CM. She made me feel so excited about our trip. Because of all the suggestions and info from everyone I was well informed and did even cry once! LOL

Here is what we have:

1900 Park Fare. DD (11) was Drizella in Cinderella in June and meeting the Tremaine's will be so fun.
CRT. Even DS (9) is excited about this!
BOG. The theming looks great!

We've never eaten at any of these and it will be so fun to enjoy the experiences; even if I can't eat a single thing. I will update when we return as well. I know the TS will be a welcome break to rest our legs and have a break from the heat.

Thanks again for the help!