I'm getting old! Better celebrate it Disney-style! - A Winter 2019 PTR

Glad to hear your trip is still on.

My husband and 12yo dd have Marfan's syndrome which is also a soft connective tissue disease. They both have mild symptoms.

If you have any Disney or Universal questions, let me know. We had annual passes to Universal 2016-2017 and were able to make 3 trips during that time. It's been a couple years since our last Disney trip, but I stay up to date on what's going on.

We don't do many sit down meals so I'm not sure how helpful I would be there. We do love Mythos at Islands of Adventure.

Happy planning.
 
Hi @vleeth and welcome to my PTR!

I am quite familiar with Marfan, a good friend of mine (which I met here on the DIS!) has it... I of course also learned about Marfan's syndrome while learning about rare disease, connective tissue diseases in general and EDS in particular.

Thank you for your kind offer to answer questions, so much has changed since my 3 Disney trips and one Universal trip! (last Universal and Disney trip was in 2013).

Sadly the trip is on hold once again... well I don't know. We might book it this summer anyways, but it will be knowing it might not happen.

I just learned I have keratoconus, which is a deformation of the cornea (the front part of the eye) - in both eyes. This is sadly very common with Ehlers-Danlos syndrome (and with most connective tissue diseases I guess).
My vision is blurry and is getting worse, and to help stop or slow the progression, as well as help me see better, I'll need special contact lenses (and probably glasses for when I can't wear the contacts -but that doesn't prevent progression). Since it's very complex, I might need to try many different types of contacts, and it will cost a lot of money. There might also be a treatment to help slow down the progression of the disease, but that will also be costly. Of course not ending up legally blind has priority, so we will see how lucky I am in lens fittings over the next few months.
 
Sorry to hear that. Hopefully things will go well with your vision and you can get back to saving for Disney.
 
Do I book to maybe cancel later... do I wait a bit... or do I wait a lot?

As I said before, I just got a new diagnosis of keratoconus. I'll probably have eye surgery this fall, to try and slow/stop the progression of this degenerative disease which, if left untreated, could lead to me being legally blind.
I'll probably have one eye done, and then something like one month recovery, and then the other eye, and another month of recovery.
I'm lucky as I'm seen in a hospital where they do the procedure and it will be covered by the public medical system, so I won't have to pay for that.

After the surgeries, though, I will need special contacts, with lots of fitting and possibly a few trials and errors, and I'm guessing I WILL have to pay for those. Which means a few thousand dollars.
Plus, I just had to buy a device to help me gain more mobility with my wheelchair, called a SmartDrive, which basically turns my manual wheelchair into an electrical one (it's an electrical-powered wheel that attaches under my wheelchair, and I just have to push once or twice and it rolls... a bit like cruise control in a car!). :moped:
It will mean I won't need someone to push me anymore (my joints are too fragile for me to push myself more than a few feet). I can't wait to go "take a walk" in the neighborhood, or go to the store by myself on bad days, enjoy nice weather... But that cost 6500$, and even though friends and family got together over the last year and donated a lot of money for it, I still had to pay a few thousand dollars myself.
I'll also have to pay about a thousand dollars for special injections in my knees next August, called platelet-rich plasma, which I'm really hopeful could help... especially because if it works, it could mean relief in other joints, like my hips and shoulders which dislocate a lot.

As if those costs weren't enough, I had to put the brakes on my job lately and haven't taken much contracts. My health gets worse the more I work, and so it's always a cost/benefit balance each time : yes we need the money, but how badly will it affect my health? Some contracts are worth it, others not so much. Mostly, it's usually that after a big rush, I need to take a longer break. And now I'm in a longer break... which means less money.

This all sounds :offtopic:, but it's to explain the situation...
I really could use the magic of looking forward to a Disney trip, and planning a Disney trip... and most of all, of being in Disney in less than a year!
I'm mature enough that I wouldn't be devastated if we booked and then cancelled.

I lived through that once (last trip with mama) and it wasn't so bad. I felt depressed for a few days, but I knew it was the only option, so it was ok... and we ended up going almost at the same time as we had planned, so it all worked out in the end! I'm hoping for a similar scenario (without the cancellation, of course).

Thing is, for it to happen, we need a lot to come together.
  • I need to get a BIG contract (or two) next fall, to cover for medical costs as well as Disney costs (I'd rather not put it all on credit! A small portion would be ok, but not most. Ideally, we put on credit what we spend while we're there, like souvenirs... and we would even have money aside already to pay for meals -which will be OOP).
  • I need to be sure my surgeries will be done and healed by the time the trip arrives, because a) my vision is more important than a trip, so I won't delay surgery to go to Disney -even if it's only a few weeks... but also because if it ends up not being this fall and they tell me "we have a spot for you on your travel dates" and I say no, it might mean a few months more of delay, which I won't do. Also because b) I couldn't fly before it's healed. Finally c) It wouldn't be as fun not seeing well!
  • I need my contact fittings to be done. I can't be in Disney with contacts (which are no ordinary contacts, btw) that don't fit right -which could mean damage to my cornea on top of bad eyesight.
That's the biggest things I can think about. I also am currently under investigation for 2 other new-ish health problems, inflammation and nerve problems (small fiber neuropathy), which both are progressing but have no clear cause yet, so no treatment except pain meds... of course it's possible I'll get a new diagnosis between now and next year and everything goes to hell, but that's life with a degenerative disease, so I can't just not book because of solely that.

Which brings me back to my 3 options.
  1. I book later this month, when the packages become available. The sooner possible, so I get the resort I want (I'd say "we", but dearest doesn't mind much. He is excited about going, yet never as much as I will be, and doesn't know WDW so he has no opinion about most things... mostly, he trusts my experience haha). That's really the only reason to book so early, as ADRs are only 6 weeks later. This means 200$ deposit, which we can afford... and which we'll get back unless we only cancel very last minute.
  2. I wait a bit, just before the 180 days ADR window. Which is the end of August.
    Since I need the downtime of sit down meals and absolutely want TS every day (to me, WDW is 50% about the food!), ADRs are a must and even though one missed ADR wouldn't ruin my trip, I do want to try and get those I want. I think I'd book resort only (unless a huge discount is offered in a package) since I don't need tickets for ADRs. Then, if things go well, a bit before the 60 days mark, I'd buy discounted tickets and book my FPs. Of course if I can get a package deal with tickets, I'd do so mostly because it's easier to get an "exchange" (we can't get a refund, but we can use the value to buy tickets another year... and we know we WILL be going eventually). This might be the way to go.
  3. I wait a lot. And this could mean 2 things.
    a) Wait until last minute... like, until I'm sure my eyes will be "done" and we have the money, and then book for February 2019... and hope for the best for FP and ADRs, and work with what we can get... At least with my bad health we should be able to get on some of the rides without an FP (the way it works is similar, they give you a return time, and you can't do another FP ride in the meantime, it's just written on a card instead of booked online... and sadly you usually need the back entrance so you miss the themed queue, so I really only use it when I have no choice but to use my wheelchair or I'm in a bad day, or it's too hot and the line is too long and it's too dangerous for me to wait in line). So, it's not impossible... but it would be a last minute trip (anywhere from 3 months to a few weeks prior).
    Or b) wait a WHOLE lot, and book it only when my surgeries are done and we have the money in the bank... for at least 180 days ahead. Which would mean probably February 2020... (it might be Fall 2019, but my honey really prefers the end of winter, when we are so tired of it... and I totally agree).
Any tips? Any other options I missed?

One thing I can definitely say... I wish I could plan Disney trips all year long, because I had cortisone injections on three very inflamed costo-vertebral spots this morning, and it hurts like hell right now... but I was able to forget about it for a while and even delay my pain meds! Fairy dust! pixiedust:
 


2019 trip cancelled, so is this PTR.

Well... It seems I was writing mostly for myself, but that's ok. I do this mostly for myself! :sunny:

Over a year later, nothing happened in this PTR, and no planning happened.
The trip had to be postponed and we had to go with not even booking the trip, not even to cancel later.

Because of other health issues that arose, a trip was impossible in 2019. I barely left the house except to go to the hospital.

I will start another PTR, with plans for beginning of 2021... and hopefully this time my health cooperates! More details about what happened will be in there.

If you want to catch up, I'll be glad to welcome you to the new PTR! :hippie:
 

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