Getting through 5 surgeries with Disney therapy ♡ A Couple's Feb 2021 PTR

[AnnieDan_Artlover]

Well hello there!

Yes, yes, I plead guilty. I didn't even try to hide it, it's there in my signature: I did start a PTR last year and (the shame!), did not finish.
I COULD have continued on that same thread, could've changed the title, whatever. But I felt like a new beginning was the way to go!

My name is Annie-Danielle, I just turned 40 (ouch!) and I have 2 rare diseases.
I don't wanna bother with the medical details, but my health does play a major part in how we plan (and is the main reason why we had to cancel the trip planned for this fall), so I'll try to make it quick and as simple as possible.

My main problem is Ehlers-Danlos syndrome: it's genetic and I've been symptomatic since birth, but it's creating more and more problems as I get older. My collagen is faulty, which is THE cause of everything. We have collagen in about 80% of our body, so it wrecks havoc everywhere. I now have dislocations daily, should have a complete left ankle reconstruction in the next few months, and a complete left shoulder reconstruction in the year to follow. I might also need a left wrist surgery in the coming year to remove a ganglion cyst...
I have had cartilage reconstruction in my right wrist 10 years ago and surgery on my right knee as a teen...
I have orthotics for all my joints (including a cervical collar). But joints are only part of the problem. We have connective tissue everywhere, so my internal organs are also weak, which lead to digestive and cardiovascular problems, among many others.
One of those problems is corneal ectasia... starting in the summer of 2017 my vision started deteriorating fast. It took a while to get the right diagnosis. What was happening was my corneas were bending out of shape. I got to the point of being officially visually impaired (with glasses). Last February and April I had surgery (one eye at a time) to try and stop the progression. So far it seems to have worked , and now I can see a bit better with glasses; but we have no guarantee of how long it will last.

Last November, I got diagnosed with adrenal insufficiency, sometimes known as Addison's disease. It's similar to type 1 diabetes, except instead of not producing insulin, my body doesn't produce cortisol. Cortisol is an hormone we need to regulate electrolytes like sodium and potassium, to control our heart rhythm and other essential functions. Unlike diabetics with insulin, we can't check our cortisol levels. No glucometer, nothing. Our only way is to monitor how we feel, our symptoms... and if we feel we get low, take more of our meds. And take more in case of stress or infection (as the body needs more cortisol in these cases).
In case of emergency, we too have an injection. Except it's a syringe and a vial, not something easy to inject. That's life with a rare disease...
And if we don't take enough meds or don't inject in time, we can die. Not saying this to be a drama queen, just because a) I feel it's important to raise awareness and b) it's something to keep in mind. Also... lets just say our travel insurance will cost quite a bit more this time around!

So we could not travel in 2019 as planned, because I had just learned of this new adrenal insufficiency diagnosis I had to learn to manage (and had to get better, which takes a few months with the meds); because I was to have those 2 eye surgeries, which would also mean I would lose some revenue (I can't work a lot, I do translation and editing from home VERY part-time... but without my eyes I couldn't even do that); because the special contact lenses I will need this fall to help me see better will cost about $1,000. And then because of my injuries and upcoming surgeries.

I have frequent dislocations and many difficulties day to day... but last summer I had that "one too many" injury to my left ankle and now I can't walk more than a few feet; as for my left shoulder, in the same way, it's been unstable for years but since March it just doesn't hold anymore. In fact, I spent last week unable to use any of my arms because I also dislocated my right shoulder (fun times!).

Oh, and I forgot... I also learned last February that some symptoms I've been having since 2018 were due to gallstones... and I'm still waiting for my surgery to remove my gallbladder (which should happen soon now... it was supposed to be this summer, so, I'm just waiting for the call).

Looking at me (especially on a good day, especially with makeup on and my hair done), I look normal. Healthy even! That's life with invisible illness. Unless I am using my wheelchair, wearing my medical mask or one of my orthotics, you won't know by looking at me. Yet most days I need help with dressing up, to prepare food, I can't wash my own hair, etc.

If you wanna learn more about life with rare diseases, you can follow my Instagram account dedicated to raising awareness (both in English and French): @maviedezebre

With me will be the love of my life as well as my caregiver, Y, 35.
Not a "Disney fan", but he does like Disney stuff, will watch Disney movies with me (he was the one suggesting we watch Aladdin yesterday!).
Visited MK with his grandparents as a kid and quite excited to go with me. Even joked (...or was it serious?) that we should move to Orlando so we could visit WDW all the time! ...because we live in Quebec (Canada) where the winter never ends (and is so hard on my health...).
He is working in QA for now, but studying at the same time to develop video games, his passion.

We are both geeks and a bit nerdy. I love boardgames as much as he loves video games, we love to cook and enjoy music a lot. If my health (and our budget) was better, we would probably go see at least one show every week.
We are also furparents of 3 cats (2 of whom need special care).

Here we are!

 

[AnnieDan_Artlover]

Table of contents

Who am I?
Why this PTR title?
When?
Spreadsheets are out!
Should we stay longer?
To agent or not to agent?
Now it's for real!
Disaster averted
Fuzzy Disney math
New surgery count...
Life is on hold, so is the trip, and it's ok

 

[AnnieDan_Artlover]

Why this PTR title?

I explained about my 2 rare diseases.
I said I had 2 eye surgeries in 2019 already and that I was waiting for 3 more, maybe 4 (did I mention the possible 4th?). Anyways, before 2019 is over I should've had a total of 4. I should have the 5th (and possible 6th, if we do it) surgery before our 2021 WDW trip.

Illness and surgery is never fun. Rehab is never easy. For anyone.
When you add diagnoses and surgeries on top of each other, it gets harder.

They started Make-a-Wish and those similar programs for kids because of that. To give them motivation, inspire them to continue fighting. Have something fun to look forward to, and not just treatments and a long line of painful days.
...let me clue you in on something: it's just as hard for adults. But there are no such programs for adults.

So I'm making my own Make-a-Wish. Except, honestly, planning the trip, in itself, is great therapy as well!
Most everyone here on the DIS loves to plan and the escape it provides!

I'm using Disney and WDW trip planning as my one of my therapies to forget the pain, forget the everyday problems of illness... and once I'll have my ankle/foot surgery, I'll use the trip as my main motivation to get walking. Because it will be something like a year-long rehab. I'll probably won't be healed in time shoulder-wise when I get to WDW... we will have to discuss how much I'll be able to do or not, and when, and maybe that will mean we will have to change our dates... but it's so far ahead I don't want to think about that for now. But... I will use the trip as motivation to heal that shoulder as fast as possible.
And to heal my wrist as fast as possible if I end up needing that 6th surgery in 2 years (gosh, my body is a rabbit hole, isn't it?)

I firmly plan on being in WDW in 18 months with a button saying "Celebrating surviving 5 surgeries". Because that is my goal.
On December 31st this year I was not excited at all. I just wanted the year to be over already. I called 2019 "the year of surgeries", and I knew it had to be rough to get better... (only thought I'd need 3 surgeries then, not up to 6!).
I've done 2 of the surgeries, now bring on the rest, I can take it!

 

[AnnieDan_Artlover]

When?

To decide when, first we need to "go back".
(I know, I know, the PTR title is a giveaway, but let's share the process!)

As you can see in my signature, I went in April and May 2008 (Epcot's Flower & Garden Festival! Spring time!), in December 2012 (Holidays! MVMCP!) and in the Fall of 2013 (Halloween! Epcot's Food & Wine Festival!). So I have tried the big highlights, one could say.
Choosing when to go back isn't easy! I loved all three.
Late spring was a bit hot for me though, and the F&G was a bit underwhelming. But between Halloween, the Holidays and F&W, it's hard to choose!
With my health, I can't go after early May until late September... we also don't have kids so we can avoid those crowds.

As I said in our presentation post, Y only visited MK, once, with his grandparents when he was around 10 y.o. Doesn't remember much, so he doesn't favor a time based on anything Disney. BUT... he does favor lower crowds, lower prices (as do I!) and most of all : going in the winter, when you get those seasonal blues, like in February. We live in Montreal, Quebec (Canada), and here winter can start as early as late October and end late April (like last year, ugh). Snow is nice for the holidays, or if you are really into winter sports, but otherwise... the lack of sun just gets to you and, well... I can agree with him that February would be a nice time to leave this hell for some pixie magic!

We are foodies though, and I was sad not to go during F&W... until I learned about that new Festival of the Arts, where they have a few food booths as well! That's why the original plan was to go during September 2019 (and not February), also, we plan on going to Universal, and since we both love Halloween, I was hoping we might do a HHN there.
But Y really prefers to goin late winter and I don't mind too much.

I'm thinking if for some reason we need to yet-again postpone this trip, it might be plan B : go during the fall. But I am well aware that fall 2021 will be the worst time ever a.k.a. 50th anniversary! So unless the changes happen very early on, it might be impossible to get rooms, ADRs or FPs, and forget low crowds!
But hey, I am OPTIMIST, this trip WILL HAPPEN. I will be able to WALK (but won't be crushed if I need a scooter or my powered wheelchair).

I have checked the room prices calendar.
At first I was looking for late Feb. early March (making it as late in the winter as possible, so we are VERY tired of winter, and closer as possible to Spring when coming back, you know?
But I noticed the prices are lowest from January 20th until Valentines' Day, so it should be around those dates. Our 5th anniversary (of being together, we are not married) will be on January 2021, so it would also be a nice timing!

I just need to check how long we want to spend at each park, check the timing for flights, and make sure there are no big events that would make our stay less magical (like some convention or marathon), and set the dates!

I am worried a bit though... so many things will happen in WDW, construction and all, I don't want to miss too much or suffer inconveniences from unfinished projects. In my mind we would be fine since projects are usually on time in WDW and I had it in my mind that "opening in 2021" meant it would be open by the beginning of the year... It just dawned on me yesterday that the 50th anniversary being actually in October might mean that most projects might only open in the summer, or even October... I know, I can be slow sometimes
Of course the celebrations could start in the fall 2020 as well, we never know... and we can't just wait for everything to be finished (especially since they will hopefully continue on this path of expansion). It will just give us a good reason to go back!
But... I will try to make a list of all that is coming and make sure that the biggest items on my list will be open (or should be).

It's time to get the Excel sheets out!

 

[AnnieDan_Artlover]

Spreadsheets are out!

It's been a while, but I haven't given up on this PTR and the trip hasn't been shelved again, no worries!
It's just that I finally had a few contracts to do (which is great, because this girl needs money for the Disney fund!) and my health wasn't great.

I also finally had the 3rd surgery of 2019, this one to remove my gallbladder. I'm still recovering (it was exactly a week ago!), but I'm finally able to eat almost normally, after months of having to cut more and more stuff out of my diet, until finally I could barely eat anything these past few weeks and had biliary colics daily.

Now that I'm finally up to using screens again, I'm watching WDW YouTube videos and updating my planning files.
I started them back in 2007, some were from my travel agent (I had used one back then, even though by the time the trip arrived she told me I could as well work for them ), some were from websites like the Passporter which don't exist anymore. But all of the material I got I eventually updated and made my own.

I used to have a ton of different Excel sheets (or Pages, as I'm on Mac), but I'm more efficient now, using different sheets in the same file.

I had not really updated them in detail last time, and some were incomplete, as going with my mom for the 3rd time, many things were not necessary. But this time it's different! I need to look at things with a fresh set of eyes, as Y is going for his first time (his visit almost 30 years ago, just to MK, barely counts!), and the parks changed so much since 2013 too! Also, my mom has motion sickness and couldn't do most of the attractions... and after the first visit, she had her own preferences... with Y, he prefers to rely on my experience, mostly because he doesn't want to be told too much so as to have surprises. No spoilers!
So, for example, no columns for "his and hers wishlists". I am making note of the must-do's and "if possible" and that's it.

So I have 3 working documents (for now!).
The main one is my Disney planner... It really is 5 documents in one.
-First sheet is the different financial options, in different tables. Comparing AP discount vs. OOP vs. free dining/rack rate for example. Which reminds me I need to go over those numbers again, because it's been almost a year, and some options have changed!
-Second sheet is the budget... In this I have a break down of all possible costs: number of days, exchange rate, tickets, airfare, tips, roaming charges, name it. I've been using that same sheet in one form or another since the 2007 and making changes as I go. I try to stick to it as much as I can and be as detailed as possible.
-Third sheet is my bible, my plan. It started as simply a way to figure out how much time to devote to what park, to visualize better how our trip would happen, and because I am bad at figuring out what day happened when... like, if you leave on Saturday 22nd and you drive for 2 days, and then visit Universal for 3 days, and do a split stay in WDW, checking out is what day again? How many nights total? I'd be so lost and always making mistakes! So it's like a calendar but in columns... each day numbered, with also the date and day of the week, what park has EMH, all park hours and what we plan to do on each day. If we have ADRs I put the confirmation number on there. I color code things so we can see at a glance what's going on. It starts with more info (to help choose, like parades and events), and once plans are decided, I only keep what's relevant. And I print those to keep in my pocket.
-Fourth sheet is the list of restaurants we plan on going to. I have a second list of restaurants... this is because I didn't use the other one last time, still not sure if I'll use this one again. If I do, this will be the list of our final choices.
-Last sheet is for tips I don't want to forget... I have an Evernote folder for our trip also, and notes in a Word document as well (which I haven't needed to look at in over 10 years!), but I keep it there for easy access.

Second big document, the one I've started working on this week and hadn't really touched since 2008, is my "what to do" file, once again, it's really multiple documents (8 total!). In fact, it really is 4 documents... once for WDW and once for Universal.
First set is attraction list.
Second set is entertainment (shows, street entertainment, activities).
Third is characters... I have met pretty much all the characters I wanted in our first 3 trips, but I wouldn't mind meeting a few. I just don't plan to and don't feel like spending my time for that this time around. I asked Y though and he said maybe he would like to meet some, depending on whom. So I am taking notes of which characters are where, in case there are some special ones he would like to meet. I love that he'd like to meet characters (instead of being a grinch), so I will definitely do all I can to make that happen!
Final set is restaurants (and a few snack places that we can't miss). I don't want to just go back to the places we have been (although some I definitely want to go to again!), so I want to list all the restaurants and decide from that.

My last document is to have fun while we count down the weeks!
I asked my parents to gift me the Disney+ subscription for Christmas (hopefully a bit early ), and I already have a few of the movies of course... I suggested to Y that we do something I had read on here a while ago, which is to do thematic evenings, like eating italian food and maybe do a special activity, and then watch Lady and the Tramp... same can be done with a few Universal movies they have attractions of, like Despicable Me or Harry Potter.
So, I listed all Disney movies that had ties to an attraction (and a few classics) and will start the Universal list soon.
...and we definitely won't have time to watch them all.
We like watching movies... but not as much as others. We prefer playing video games or boardgames, and Y tends to fall asleep if we watch something in the evening after work, which is why we rarely watch TV...we might watch a TV show/Netflix but on weekdays we try to keep it short. So... there are over a 100 Disney movies to watch, add the Universal stuff... the trip is in less than 70 weeks! Suddenly the trip seems soon! And that's the whole point of this neat idea!
Now I just have to go through that movie list and add some themes and ideas to it (not just go with a type of food each time). I guess it could be WDW recipes Like Konga toast when watching Lilo & Stitch!

This all has been great putting me in a Disney mood, and spend my post-surgery recovery time.

I also have checked resort and ticket prices on Disney's web site, signed in to check the planning videos and for the mailing list... hoping a bit it might put me in the running for discount codes eventually. Signed for the Universal's mailing list as well and will check resort and ticket prices soon for the same reason...

Next step will be to update the options comparison and finish my lists, so I can see how many days we need to be in each park.

 

[AnnieDan_Artlover]

Should we stay longer?

I've done the list of Universal attractions... In 2013 we stayed there for 2 whole days, spent short days each time and all in all, spent one day per park and didn't have time to do everything. So I am thinking of adding a third day so we can take it easy and do some rides a second time if we want to (I definitely want to ride Rip Ride Rockit at least twice!!!).

Also, I didn't think we would do a water park (being early February, and me being unable to climb too many stairs and all)... but I asked Y what he wanted, and he'd love to do at least one! Even if it means staying one more day... and paying a bit more.
Of course the weather might not be great, and it might be hard to predict... so we decided we will not buy our tickets for that, but just leave time for it. If the weather is good enough and we feel like going, we will pay for that water park day ticket (and lose the opportunity for the deal I could get by bundling it or getting it early).

It will be difficult to plan without planning for it... I'll try to leave space in the schedule to slide a water park day (or maybe put the water park day in, and put another day in there we could swipe it with in case of bad weather).

What started as a 2 weeks trip is now closer to 17 days... but I'm not even sure it's going to be enough. I'll finish my attractions list and have a better idea. I know we won't be able to do it all, but there's "not doing everything" and "missing most of it".

Looking back at my mom and I first trip in 2007, we had days where we barely did anything, and in 16 days we were far from having done everything. That's what scaring me.
Of course mama would take forever to get ready in the mornings, we did every show and I wanted to see every shop, plus we saw a LOT of characters... and I was in a manual wheelchair (which, her walking slowly, didn't help).
Yet, even in our last trips, where I was able to walk, we weren't able to do days longer than 8 or 9 hours (usually arriving at the parks late morning and leaving after dinner), and usually doing around 4-5 attractions per day... of course we didn't have that "we didn't do anything" feeling, mostly because it was our second and third time... but I know I'll want to do more with Y!
But hey, over 2 weeks in Orlando and almost 2 weeks in the Happiest place in the World will be the best!

 

[AnnieDan_Artlover]

To agent or not to agent?

Wow, I can't believe I didn't write for so long!

Surgery #4 happened on November 21st. Ankle reconstruction and plantar plate repair. I still can't walk, can only put 25% of my weight on my leg, with crutches... can't really use crutches until I can put a lot more weight on it as my shoulders and wrist dislocate. It's been, and will continue to be, a very long recovery.

Of course I got Disney+ to help in the recovery, and we watched the Christmas specials over the holidays!

Even though I'm stuck in my recliner 24/7 (to sleep and eat too, yes sir, when I say 24/7 I mean 24/7), I don't have enough time and energy to do it all... my freelance translation work, my advocacy work, managing my health, etc. And believe me, when you have multiple rare illnesses, managing your health takes multiple hours every week.
But now I need to spend more time in my Disney planning or I'll have problems!

I was sure 2020 coming would mean we would be able to book our trip ...it seems it's not the case. I never went in this season before... I was really confused: when can we book January/February rooms?!
I remembered you could book Disney resorts up to 500 days or something like that... (it's actually 499).
Since some ADRs can be made from 365 days out and since we want a specific resort... I don't want to wait too long. So I just checked. Turns out you can only do so over the phone! I'm surprised. Why would it be available, but only by phone?! And of course with that long-distance phone number.
And packages are only available starting in June. That I don't mind, as I doubt a package will be of better value for us.
Of course I know that if you get a room, and then want a discount or package, your ressie will be cancelled and you will just get a new one... so getting one right now will do nothing if we end up wanting a package in June. Which I doubt, as I said. We might want a discount along the way, though. And there is none right now... might want to wait for that.

This made me wonder if maybe I should go through a travel agent. We used DreamsUnlimited in the past (twice) and it was a great experience. The second time we had to cancel the trip, sadly. And when we finally went we just did our thing.
First time using DU was our first trip, but even then, by the end, our agent told me I could go and work for them In fact, it's the main reason why I don't really want to go through an agency... it kind of feels like overkill, since I know so much. I remember last time it felt like I was using a service I didn't need, in a way? Like I felt bad!
At the same time, especially with my health, it might be like an insurance policy... making sure someone would be able to make the calls for the ADRs (if a call is needed), check online at the right time, and not missing a discount, of course!
And I realize I'm not as in the loop as I used to be, and lacking time to get back in as much as I'd love to.
...but it also means having to do some back and forth in case changes are needed, having to involve the agent for every small change, instead of doing it all just myself.

I'm torn!!!

If anyone's reading and has input about this, please go ahead!

 

[Pesky]

Wow you have a lot on your plate! I love your enthusiasm. It makes me feel normal. I don’t think our next WDW trip can be until 2022 and I’m still planning! Re your questions on to use and agent or not, sadly I’m of no help. I’d probably research a bit more or I’d reach out on one of the other boards or message the known Canadian contingent like pkondz or fallon to ask what they recommend. Good luck and happy planning!

 

[Minniemoo15]

There actually IS a toll-free Disney number ... it's not very well known but it works. It is for ticketing but 90% of the time they are able to do what I need them to do (dining, room request, etc). If they aren't - they always transfer me to the right department. 1-888-870-9173... Long distance charges add up!

I think your best bet is to hope for a Canadian Ticket discount (usually announced August-October) and stack with it a room only discount when they come out in the fall. We have had great savings that way.

 

[AnnieDan_Artlover]

Hi Pesky and welcome to my PTR! Of course we are normal

A dear friend convinced me and I'll go with the agent... but I'll tell more about it in my next post

Wow you have a lot on your plate! I love your enthusiasm. It makes me feel normal. I don’t think our next WDW trip can be until 2022 and I’m still planning! Re your questions on to use and agent or not, sadly I’m of no help. I’d probably research a bit more or I’d reach out on one of the other boards or message the known Canadian contingent like pkondz or fallon to ask what they recommend. Good luck and happy planning!

 

[AnnieDan_Artlover]

Hey Minniemoo15, welcome!

There is?! Dammit, where was that info back when I absolutely had to call for ADRs in 2008
Thanks so much, I'll keep this number in my files for sure! I had used Skype back in the day, but it still made things more complicated!

I definitely am hoping for the Canadian Ticket discount! We can never be 100% sure those will happen, but I'm crossing my fingers! I need to re-do the math to check how that discount for 2 tickets would stack up against 1 annual pass with room discount it can give.
Of course we also sometimes get Canadian room discounts but so late that I wouldn't dare NOT making a reservation until then! And definitely need to have my room ressie for the ADRs, which for end of January will start in August!

...OMG I just realized we will be making our ADRs THIS YEAR! Finally!

There actually IS a toll-free Disney number ... it's not very well known but it works. It is for ticketing but 90% of the time they are able to do what I need them to do (dining, room request, etc). If they aren't - they always transfer me to the right department. 1-888-870-9173... Long distance charges add up!

I think your best bet is to hope for a Canadian Ticket discount (usually announced August-October) and stack with it a room only discount when they come out in the fall. We have had great savings that way.

 

[AnnieDan_Artlover]

Now it's for real!

So much has happened in a week!

After talking to my dear friend @dreamer17555 she reminded me how we basically owe the DIS to Dreams Unlimited, and that going through them was helping them, since they get a commission, even though it doesn't cost me any extra... and even though I don't need them a whole lot (knowing how to go about this and loving the planning... doing more than they would, probably!), it's not like I'm taking advantage of them or anything... because that's how I was feeling! But I needed to be reminded how we both needed each other!
I definitely wanted to help out give a bit of commission money to Dreams and help the DIS! They've helped me for over 10 years now!

So... to get a quote, I had to be sure of my dates and basic plan.
I went back and checked the major events planned at Universal and WDW, and holidays for 2021.
Finalized the attractions and entertainment lists I had made for each park, noting for each if it was on the wishlist and putting a few must-do's in bold... Of course that first list is almost all wishlist.

We had talked about doing one water park... but then I told Y what the weather usually is at this time of year, and he decided against it. It might be nice enough, but it might be just cold enough to not be super tempting to get wet... and we don't want to spend extra money, especially don't want to lose park time for that!

As I said before, I know we won't have time to do it all, but am afraid we won't have time to do "enough"... using the average from the last trip I did with my mom, I guesstimate about 12 usable hours a day, with about 10 of those hours in a park, about 1 hour per attraction or show... so about 8-10 attractions a day.

There is only 25 things we wanna do in Universal (both parks combined). But 90 in WDW! Which would mean we need 3 days in Universal and at least 11 in WDW.

I remembered we spent 2 and a half days in Universal, where I skipped many attractions, and my mom doesn't do rides. Y is a thrill ride lover, and I'm thinking he might enjoy the parks a lot so I want to leave us enough time to do more, and do some rides a second time.

I looked at the quick plan I had whipped up a while ago (and changed a few times already), moved a few things around, making sure we had the fewest weekends in there as possible, left before President's Day weekend as well (and Valentine's Day!), checked the possible flights to plan arrival and departure days...

And here is the final overall plan now :
January 25 2021 : flight to MCO in the evening (arrival at the hotel probably around midnight)
Jan. 26, 27, 28, 29 : Universal
Jan. 29 : Transfer to WDW in the evening
Jan. 30 to Feb. 11 : Disney!!!
Feb 11 : flight back in the evening

Overall, it's 18 days away (if we count our arrival day), leaving on a Monday night (leaving us the whole weekend prior to get ready) and coming back on a Thursday evening (and my boyfriend will take the Friday off as well, leaving us the whole weekend after to settle back as well... and extra wiggle room if there is any problem).

So, sure, we will arrive very late and "waste" a night at Universal... but it means we are fresh and ready the next morning to hit the parks. The other flights are either mid-day, with connections and waits and we arrive too late to enjoy the parks anyways... or very early and we need to get up in the middle of the night (...or not go to sleep at all), and we arrive so tired and messed up that we can't really enjoy the parks anyways.
Transferring in the evening ensures we enjoy that 4th day at Universal... but we could always decide to transfer earlier if we prefer, and just enjoy Disney Springs or the resorts.
And we leave late enough that we really can enjoy our last park day!

Little romantic fact: the trip will last from the weekend after our 5th anniversary to the weekend before Valentine's Day! ♡

Now that this plan was settled and Y approved, I confirmed with him that he was OK with Pop Century as our resort. I had explained to him the differences between value, moderate and deluxe, showed him a few details, like how big WDW is... I had told him about how we loooved staying at Y&BC in 2013, but how renting points meant no easy refund (otherwise it would've been a no-brainer). I had checked the Swan & Dolphin, having read so often that it could be so cheap... well, I didn't see so cheap prices! Even with discounts it would still be quite costly! Probably not as much as Y&BC, but still way more than Pop Century!

With the Skyliner, Pop looks like a great option. Of course, I hope we won't spend too much time there and will mostly be there to sleep (meaning, I hope I won't have bad days where I have to stay in bed...), otherwise being stuck in the room will be much worse at Pop...

Y asked to see a few pictures of Pop Century, just to be sure... but he knew I had done my research and he trusts me. It was just to get an idea and feel like he participated. Which I appreciated! So, he said to go ahead.

Finally, I could ask for the quote (for the WDW Resort, anyways!).
I did that a few days ago... For 13 nights, it was $2,311.89. We paid the one-night deposit and now... IT'S REAL!

Not only is the reservation officially made, the trip is now less than a year away!!!

 

[AnnieDan_Artlover]

Disaster averted

I love roller-coasters. But not that kind.
Of course this had to happen AFTER I finished the plan, made the reservation for Pop and wrote that last post.

As I wrote in my first post, we had initially planned to go to Disney in 2019. It was to be my 40th birthday trip. That was the plan since 2017. But then we realized (around spring 2018, when I started the serious planning), that there was no way we could get the money in time... and then I got injured in the summer and it was settled: definitely not possible for 2019, or 2020 for that matter. So we decided we would plan for winter 2021, and committed to it. It would happen. It wasn't a "it would be fun if..." We would put money aside and focus, I would plan, we would make the reservations, etc. If my health declined or whatever we would postpone, but we would plan seriously, hoping it would happen, be optimistic... and it would help me through those very hard months. As I said: it's my own Make-a-Wish trip.

But I had done a lot of the work back in 2018. Had taken my 2012 and 2013 trips budget and checked the updated prices, looked at the event dates to see when to go (a must for the updated prices!), checked the exchange rate, etc. ...that's how I could see we wouldn't be able to afford the trip in 2019...

I knew Disney had increased its prices since 2018, but hadn't thought it would impact us THAT much.
I'm sure you see me coming.

And major stupid mistake, I did NOT update my budget BEFORE finalizing the plan, asking the quote from Dreams or making the Pop ressie.
I know.

I was in the middle of doing something else (re-doing my food spreadsheet I think?) when out of the deep corner of my brain... or maybe the corner of my eye, seeing the "budget" tab of my file... I thought "hum, I should check how the budget stacks up.
I wasn't worried at all, honestly. I was just curious and wanted to make sure I didn't forget anything.
I also mostly wanted to re-check if the option I was going for was the best (I'll get back to that, but I'm talking about going OOP vs DDP, or AP vs regular tickets, etc.)

OH DEAR.

I had NOT forgotten anything.
Well, I kinda did. I had forgotten to add souvenirs money and transport between Universal and WDW, for example...
But that wasn't the problem.

Problem was, I somehow forgot about the exchange rate somewhere, and was going with the USD amount!!!
I mean, I had NOTED the 2018 exchange rate at the top of my file... (0.79 back then), but I had kept the USD amounts, since of course the exchange rate changes all the time... Yet I somehow totally forgot, and thought the total was in CAD.

Now... add the few items I forgot (maybe 500$ more?).
The price increases (at least 1000$ more).
AND THAT &*?%* exchange rate (now even worse, at 0.76)... think about it, it's almost 25% more!

And you get a trip that costs WAY more than I planned.

Initially, we were planning a $8,500 trip.
Which was already a lot for us. And I mean A LOT.
As I said, I'm sick. I can't work a lot, and have lots of medical costs. This year my medical costs are more than what I made... and I made less than $8,500... But hey, we've been wanting to do this trip for a long time and it's therapy for me so... choices, right? I don't drink alcohol, we rarely go out (because of my health), that's where we will spend our money.

Anyways, point is: planned trip was that amount. And we already felt it was a ton of money.
But now turns out it's over 10k in USD... so almost 15k in CAD! WUH?No way.
As much as I want to go, I don't think I'd pay for that even if we could! It's psychological, but over 10k... nah.

There are other trips I want to make and I can't help but think: we could spend over a month in Europe with that money... (although the exchange rate is even worse with the Euro...).

What boggled my mind and made me almost angry was, this was already a watered down trip to make it less costly! I'm not saying it was a cheap trip, of course... but it was more or less the cheapest I could make it for me to be able to enjoy it, not come out full of regrets.
As I said many times already, I know I can't do a lot in one day, so I know if we go for just a week, there will be way too many things we won't be able to do. If we stay offsite and rent a car (...which might not turn out that much cheaper anyways), the energy and transport time will take more energy out of me.
Both Y and me want to stay in the Disney bubble and enjoy Disney food, it's part of why we wanna go (I'm lucky he feels the same way!). So we don't want to do it the cheap way (and I don't mean that in a bad way, I mean cost-wise), like eating PB&J in the room before leaving in the morning and having an off-site pizza for dinner, etc. We definitely might eat a left-over cupcake for breakfast though

But it's a watered-down version, not my dream-trip!
In 2013 with mama, we stayed at Y&BC with rented points for 15 days, drove down and back (so 6 days on the road), were not careful about our food budget (we still split a lot of food, simply because it was too much, not to save money), did the MNSSHP and a special event at the F&WF... and still came up around $8,500CAD! ...but the CAD and USD were on par back then.

It was quite frustrating to realize that even staying at a value resort and flying in, and staying less days overall (a trip of 18 instead of 23 days total), would cost so much more. Even before adding that exchange rate!

I looked at that and felt so defeated.
Planning this has been my therapy, my escape and my motivation for months.
Walking around Disney (instead of using a wheelchair) has been my motivation those past 2 months. Seeing myself walk around the parks is what kept me going through the pain and long days of being stuck in my recliner, dependant on others to do everything from brushing my teeth to getting a snack, brushing my hair to going to the bathroom.

And now... it just wouldn't be possible.
I would have to postpone AGAIN.

When I told Y that it would cost WAY more than I thought initially, he started by asking if pushing the trip back to the fall would give us enough time to get the money to make it work.
Even though he wasn't keen on the idea of waiting 9 more months before going (I love that he's anxious to go!).
...but as I said... as much of a Disney nut as I am, spending that much money on this trip just doesn't make sense to me, not spending over 10k for a trip (...I mean, if we had way more money, and if it were for a plush trip in a deluxe resort with tons of luxury stuff, it'd be different... but for a regular trip in a value resort? nope). I mean, if we are going to spend so much, might as well spend a tad bit more and buy into DVC haha!

So I told him I'd rather just wait until we made more money, so it would make more sense... or until the exchange rate got better (sadly, it's been pretty similar for years, but hey, one can hope).

I was so, so sad. I felt like I'd been defeated by a worthy opponent. Recognized my defeat.
Tried to move on... looked at trips we could make for less, trips we've been wanting to make. Europe, Asia, South America. Places like Costa Rica or Japan maybe, where the exchange rate is pretty good right now.
...but as much as I've been dreaming of going to these places, I've been planning and daydreaming about WDW with my honey for years now. So thinking about those trips just couldn't get me excited. Rebound trip just wasn't working

Talking about this with mama, she asked if the budget could work by ditching Universal.
...she asked about ditching WDW and just going to Universal, and I just about fainted! Seriously?!

I did the math again.
And it worked!
Without Universal, we not only save 4 days worth of food, but over 50$ in transporation, as we would've had to pay for the shuttle between MCO and Universal, and some sort of transport between Universal and WDW, and bell services tips at each, plus housekeeping tips for every day at Universal as well... it all adds up. And of course the two APs we would've gotten there as well.

Without Universal, the budget now stands at around $7,500 USD... so around $9,000 CAD. It might cost less if we spend less than I anticipate in food and souvenirs, but I prefer budgeting a bit more than the opposite for those.
I also cut the paid activities (I was hoping we could do one event like a dessert party or After Hours event, but it's not essential). We do plan on going to Cirque du Soleil though, we are big fans and never miss a show here in Montreal.

We are hoping to do another trip, maybe around 2025, and maybe fly to MCO, rent a car or RV, and do a Florida roadtrip, visiting Universal (where the new Epic Universe and Nintendo World will be open!), Kennedy Space Center, then down to Miami and the Keys... Not sure I'll be able to NOT visit Disney as well, but maybe? If not well, we would be able to stay less longer as it wouldn't be our first stay, and might have more money... anyways, that's how we are able to not feel too bad about not visiting Universal this time : next time will be even better, with a third park at Universal and a roadtrip we both want to do on top!

So...9k is a bit over the planned budget, and I'll be happy if I can get that even lower... Hopefully the exchange rate will get better by next year... That budget also includes ALL discounts I'm hoping to get, so it could also be worse... but we are optimistic!

Most importantly: THE TRIP IS BACK ON TRACK. Or... well... isn't postponed!

I am so relieved, so happy!

And today, I walked a dozen steps with my crutches!!! Recovery is going much, much faster than I anticipated, so I'm thrilled!!!

 

[AnnieDan_Artlover]

Fuzzy Disney math

Here is what I got when I redid my Disney math. I compared only resort + food + park entry fee.
That's for 13 days/night, and I estimate about $150 a day for food (I looked at a few QS and TS menus and guesstimated how much it could cost on average). Of course that's rounded up and not exact numbers. All in USD.
*I added the DVC point rentals mostly for comparison.

-> Renting DVC points ($3,400) + paying OOP for food with AP (10%) + TiW (20%)discounts ($1,800) and 2 APs ($2,400) = $7,600.
-> Renting DVC points ($3,400) + paying OOP for food -no discount ($2,000) and regular park tickets ($1,550) = $6,950.
-> Value resort @ rack rate ($2,300) + paying OOP for food -no discount ($2,000) and regular park tickets ($1,550) = $5,850
-> Value resort with Canadian resident discount of 20% ($1,850) + paying OOP for food -no discount ($2,000) + Canadian discounted park tickets of 20% ($1,550) = $5,400
-> Value resort w/ AP discount of 25% ($1,725) + paying OOP for food with AP (10%) + TiW (20%) discounts ($1,800) + TiW card ($150) + 1x AP ($1,200) + 1x Canadian discounted park tickets of 20% ($770) = $5,650
-> Value resort @ rack rate ($2,300) + free dining (say we waited for the fall hoping for that) + upgrade to regular DDP ($585) and regular park tickets = $4,885

*sorry, I notice sometimes I write my amounts in French (50$). I might be a translator by trade, I'm not paid to write this so I just write hehe my brain thinks bilingually (is that even a word? see, I won't go check ), and I don't always write it correctly. I'm sure you guys can follow

Obviously, waiting for the fall and hoping for free dining would save us a lot of money. Almost $1,000 CAD!
Problem is, how we eat doesn't fit the DDP at all. And it would mean going 9 months later. And when it's much more crowded... the room will probably cost more, the tickets might also cost more as well... and maybe that thousand dollars savings won't be saved after all.

I say the Dining plan isn't for us because even paying to upgrade it for 1QS and 1TS every day... it's still giving us both too much food and not the type we want!
Sure, my boyfriend eats more than my mom does and more than I do. But we both would rather have an appetizer and entree (and share one or the other, or both, because plates are so big)... and skip dessert, or have it later as a snack... than have a dessert at every meal.
There will always be way too many appetizers and entrees on the menu that tempts us... but rarely are we so excited over the desserts. And it's not that we don't like sugar! We do! But it's just how we eat. Plus, there will be Festival of the Arts, where we can just go to Epcot for lunch or dinner, and get a few snacks, which doesn't cost a ton of money, and there ya go, that's a meal. It's easier on my slow digestive system too (I have gastroparesis, which means I can't eat a lot at once... it's better now with some meds, but big meals are still a problem and much better if I eat smaller portions more often).
So it's quite possible that even if we were lucky enough to get free dining, AND upgraded, we still would have to pay for some of the food OOP... and end up with leftover credits in QS for example.

The second best option is going for ONE annual pass, which could, hopefully, give us a discount on the room (if it doesn't, we still could get a Canadian resident discount), same with the one set of park tickets! Either the AP or Canadian resident discount, so I feel more confident with that 2 chances of discounts, than betting everything on free dining.
That AP costs more than the regular tickets (especially if we get the Canadian resident discount!), but includes the photopass (Memory Maker), 10% on food and merchandise, the possibility to get Tables in Wonderland (for 20% on food and alcohol), and a few other special things.

We took APs in 2012 (which helped making the 2013 trip possible), and the TiW card was definitely worth it. I had calculated it basically paid for all gratuities, and a bit more (and paid for itself as well).
Since it will be Y's first trip, and I haven't been in WDW in over 5 years, I'm sure I'll buy for over 200$ in souvenirs, so 10% off will be welcome as well!

In fact, I'm budgeting for 500$ CAD for souvenirs... hoping it will be less but... I know it can add up so quickly. 13 days... one 20$ here, one 50$ there...
One thing I did in the last few trips is, I took some of my clothing and health/beauty budget and used it in Disney, so it wasn't exclusively "trip/souvenirs" budget.
For example, say I usually buy myself for 50$ of pajamas in the winter... well if I see one I want in Disney, it doesn't count as a souvenir, because I would've bought myself a pajama anyways. Of course for that to work, I need to not buy the clothes here
I remember I bought myself a hoodie, a nightgown, a pajama, cargo pants, a cami and a cap (not all in the same trip). I still wear my hoodie

Problem this time will be bringing those souvenirs back in the plane... I'm used to driving back!

Back to the topic at hand, sorry.

In other words, free dining, with rack rate room-tickets package is definitely the cheaper option, especially if you don't upgrade for the regular DDP, even if you pay for the Memory Maker and something extra like an After Hours party.

But in our case, not wanting to be tied up in the DDP rules... well, most of all because it doesn't fit our eating habits at all, combining one annual pass with discounted room and discounted tickets, and adding TiW, all purchased separately, seems like the best deal. The total is higher when you only consider food+resort+park entry, but factoring in merchandise and photopass it's not anymore.

Ah, and a last thing... using one regular park ticket (well, a set of 10 days and a set of 3 days) means the price will vary depending on date of arrival.
When the plan included Universal, we didn't have much leeway, I planned the schedule to have the cheapest flight and less weekends... not that it's 13 days total and only Disney, we might need to change the Pop reservation, to again have the cheapest flight and also to have the cheapest tickets!
I could see the earlier in January the cheapest it seemed to be (probably not early-early Jan, but 25th is cheaper than 29th), and Monday and Tuesday flights are cheaper than Friday... so I will check that out and change accordingly.

Part of me wishes we will notice that it cost less to stay 14-15 days instead of 13 (aka fuzzy Disney math)... but yeah, I'm not holding my breath

 

[AnnieDan_Artlover]

New surgery count...

My my, has it been over 2 weeks already since I posted last?! How time flies... But trust me, the trip has not left my mind. I've clung to this, my Disney therapy, more than you could ever imagine.

You may not have noticed, but I almost changed my PTR title, because it does say "getting through 5 surgeries", yet I only had 4 (unless you counted the double plantar plate/ankle surgery as 2... but it would be stretching it ).
The 5th surgery was because my shoulder surgery was supposed to happen before the trip. But now it's pretty sure it won't:
I'm having the MRI tomorrow, don't even have the next appointment with the surgeon yet (which could take a few months), and the recovery might take between 6 months to a year, and you can all imagine how NOT good for a freshly reconstructed shoulder riding thrill rides could be. And I definitely want to enjoy this trip! There's also the slight chance I'll need to have a small wrist surgery for a ganglion cyst, but hopefully I won't.

So, I "only" had 4 surgeries in 2019 (which is also the total surgeries I had had from birth to 2018!). Both eyes, gallblader removed and that ankle/foot repair/reconstruction thing. I almost went back and changed the title! Maybe I jinxed it?

Last week I had my first ambulance ride, spent about 15 hours in the ER (not waiting, admitted). Turns out I have kidney stones. One bigger one in particular, blocking my kidney. Went back home home for about 24 hours... and back to the ER, because it became infected (kidney infection). Because of my adrenal insufficiency (Addison's disease) and the meds I take, infections can be missed very easily (aka no or very little fever even in that case), so I was quite lucky to catch it in time.
That meant though that I had to have emergency surgery (although very minor) to install what's called a double J stent, a small tube going from my kidney to my bladder... and they had to leave the stone in place. I was hospitalized for about 24hrs and now I'm home on strong antibiotics and very, very weak.

I'll have the stent for about a month, maybe 6 weeks, and unless the stone passed on its own, I'll have another surgery (with full anesthesia that time) to remove it. Otherwise, it'll be just another minor surgery to remove the stent. And just like that I'll be at 6 surgeries in 12 months.
I just hope with all my heart that it will be all the troubles for this year, no more major injuries, no more surprise surgeries, no new diagnoses... 2018 and 2019 were real hard and I would really need a break!

When I say Disney therapy was a life saver... when in the ER and almost fainting from pain, I would picture Y and I holding hands and watching the fireworks in front of the castle in MK, thinking in one year we would be there...
And I've been binge-watching YouTube videos of Allears (Molly!) and TimTracker and DFB... of course I'm not learning a ton, as I'm no newbie, but I'm catching up with what's changed, fastfowarding when they show too much of Galaxy's Edge, Toy Story Land or Pandora, as I haven't seen those new lands and don't want to have it spoiled. Yet I want to know the tips!

One real big and good news (which I sadly couldn't really enjoy) is that I can now do a few steps without my crutches, and (when I'm not too weak), walk a bit more with the crutches! So the ankle and foot recovery is going well! I can't wait to be able to put on real shoes (still too swollen for anything but crocs) and to start walking outside and build strenght and stamina... I need to be able to walk at least 10 miles in one day (albeit not in one go) by next January!

Sadly, because of the kidney stone and infection, I've been feeling too weak to do any real trip planning, my advocacy job, translator job and personal administration (you know, budgeting, bills, email backlog, etc.) have all fallen behind...

But I wanted to come here and say hi, even though I know I'm writing pretty much for myself

 

[eliseisawkward]

Following along!

I have a friend from college with fairly severe EDS who actually works in WDW now. And while I don’t have any chronic illnesses, planning my Disney trip (it was last week) got me through some rough winter days.

Fingers crossed all the discounts you need line up and this ends up costing less than you fear!

 

[rdkeim]

Wow - you have a lot to deal with. I get that Disney planning is great therapy! Hope you are able to following through with your plans - you've put a lot of thought into every aspect. Disney prices have really gone up the last few years - kind of disappointing. I guess it does take money to create all the new lands, skyliner, etc. Good luck with your health and planning!

 

[AnnieDan_Artlover]

Welcome @eliseisawkward and @rdkeim !
So glad to see you join my super-early PTR journey

It's quite amazing @eliseisawkward that your friend gets to work in WDW! I hope they enjoy it as much as I think I would.
Does Disney offer special accommodations to help with EDS?

And no need to have a chronic illness to need Disney therapy or feel its positive impact!

But about that health of mine: I've had to go back to the hospital last week, as the antibiotics failed and the infection in my kidney came back... spent yet another night in the ER with IV antibiotics (so, 3rd ER trip and 4th night in the hospital in 10 days); and was released very early the next morning so I could go to my endocrinology appointment.
Had new antibiotics to take and will have finished them tomorrow. Seeing the urologist on Tuesday and following the scan results we will decide on surgery.
I am very weak and tired, still in quite a lot of pain as well, and the most I can do is watch videos.

I hate this. Luckily I have plenty of time to plan so it's not stressful, just frustrating.

Good news though: I now can walk through the apartment without crutches and could put running shoes on today, for the first time since my surgery 3 months ago! Pretty soon I'll be able to walk outside the house and start building strength and stamina and build up to that 20km I need for WDW!

 

[eliseisawkward]

I don’t know if they make any particular accommodations for her, but I also don’t know what exactly she does there. I think she might work at one of the resorts.

So sorry to hear about you trip to the ER. That sounds super frustrating to have constant set backs. At least you can still plan!!

 

[AnnieDan_Artlover]

Life is on hold, so is the trip, and it's ok.

Well, obviously, we now have no idea if that trip will happen. You may wonder what the heck I'm talking about, since many are only talking about a few weeks until things go back to normal, and WDW only announced it would be closed until April 1st. But this being a short-term problem is highly unlikely.

The coronavirus first started in December, became a real problem in Hubei province in China in January, and they were only able to contain it with drastic measures we would never take here... and even with those highly restrictive measures, it took them until this week to do so (which means almost 2 months!).
I'm not writing this to scare anyone, but false hope doesn't help anyone. I'd rather face facts and weigh the different possibilities than kid myself.
These social distanciation measures are the best way to slow the spread of this disease and limit the death toll until we can get treatments and a vaccine... and that vaccine will take at least a year according to experts.

Which brings us past our trip dates already. Even if they removed all the social distanciation rules, until there is a vaccine, since I'm very much at risk with my health issues, I will have to continue to stay in self-isolated. And that's not counting the possibility that the CAD will have dropped so much that we won't be able to afford the trip.

But, of course it's still possible that, by the end of January 2021, WDW will be open, we will have a vaccine AND a treatment for COVID-19, so it will be safe even for someone like me to travel and be in a public, crowded place, and maybe the changes to the economy will have even turned in our favor! Of course I'm hoping it's what ends up happening!

If that's the case, we will want to have made our ADRs in August, and FPs in the fall... except with all the unknown I really don't feel like planning this trip right now.
Honestly, as much as this trop planning has been therapeutic for me, I can't say that I felt sad or angry if it gets cancelled (like my Dallas advocacy trip has been). This crisis is so much bigger than me, so much important than a trip (or 2).
People are dying, people are losing their jobs, and sadly way more people will die and lose their jobs, many things will change (some for the best I hope!).

If we are lucky, we will still get to travel to WDW, maybe just not when planned. And that's good enough for me.

So, I'm not even sure the few who were reading this PTR will read this, since I'm guessing reading PTRs isn't high on people's to-do lists these days, but I felt like explaining why I probably won't be updating this for a few weeks. We never know, I might get the Disney planning bug, but my "plan" is to wait a few months and see how things shape up.. if by June things look good and it seems likely we could go as planned, even if it's only a slight chance, I will go back planning and we will make these ADRs and if in the fall things still look good we will get the FPs and book our flight!
If in June things look bad, or way too uncertain, I think we will either cancel or book for fall 2021, which would've been my second choice, and we will reassess in early 2021, the same way.

For now, because I'm in the at-risk population I am self-isolating (which is pretty much the same as usual). Y is working from home and also not leaving the house except if absolutely necessary, to keep me safe.
Staying at home, having to cancel stuff, not being able to have people over because they are sick... that's all routine for us. It's still never fun.

I hope every one of you is safe and will stay that way. Take care and take the opportunity to watch Disney movies with your loved ones! ♡