Trying not to freak out...need good vibes. UPDATE in comments

flutteringinfl

So I don't know that I've ever discussed it here, but my younger (and only) sister has a chronic illness. It's a very rare genetic disease that mostly affects her nervous system. When she was first diagnosed as a toddler, my parents were told she probably wouldn't make it to 10. She's 22 now, and is doing incredibly well thanks to amazing breakthroughs in research, good habits, and some mystery factors doctors are actually trying to study to see if they can help other people affected by her illness. We don't always see eye-to-eye emotionally, but she's basically my hero.

Earlier this year, she graduated from "college." I put it in quotes because it's not a true college degree, but it's still a big freaking deal. She's always struggled in school and a traditional college path was never going to be a reality for her. After high school she got to attend this program, which is basically designed for students with physical and learning disabilities. They take both basic college courses and some "life skills" courses to help get them ready for independent living, even if many of them will never be able to live completely alone. It was a big freaking deal, and we're all super proud of her. For her graduation gift, she asked our dad if she could go to Disney World, and since I live near that area (and go a lot), he asked me if I would take her, and he'd pay for her flight, food, etc. I said of course. We went together three years ago and had a blast. It was her first time on an airplane by herself and she did great.

Our trip starts this Saturday. I'll pick her up from the airport, and from there it's four days of basically whatever the hell she wants and can handle. I'm really, really looking forward to this trip. I don't get a lot of alone time just me and her, especially since I moved across the country.

I just got a call from my mom that sis is sick and they're not sure what it is. She assures me that so far, it's looking like she'll still be able to go. Dad's taking her to the Dr today and they'll run some tests and treat whatever it is, and likely based on past experience she'll respond to the treatment and be fine to travel by Saturday. She said she wouldn't have called me at all to avoid worrying me, but she needed to know what was refundable and what wasn't.

I admit, I'm freaking out a little. I'm not worried about missing Disney (I might end up going anyway, since we can't change or get a refund for the hotel). I'm more worried about her and just in general not getting to see her. And I'm also worried about her coming, having some kind of crisis, and me not being able to handle it right. And I'm worried, even though it sounds like things are under control, about her health. But I'm always worried about her health, to the point that I should probably see a therapist about it. I mean, I have dreams about her dying on a regular basis, for pete's sake.

So, any good vibes or thoughts you can send to us this week would be really appreciated. I know I'll pretty much be in knots (ha, ha) until Saturday.

larrygaga

I'm sure you will be able to handle anything that comes your way like a pro!!! Most people do a lot better in bad situations than they might expect. I hope she is feeling well enough to go!

KatieinBkln

Sending good vibes your family's way. Hopefully all will be well and the two of you will be on Splash Mountain before you know it!

JCbride2015

Sending hugs and good vibes!

ETA: You don't sound like you're freaking out too much, just being a good sister.  Heck, I have nightmares about my little sister (she's 23) dying and she is perfectly healthy.  I think it's just big sister protectiveness.

chibiyui

*hugs* I'm sure everything will be fine.

levioosa

Sending good vibes and hugs!

KatWAG

((((HUGS)))) keep us updated

climbingsingle

Sending good vibes your way, lady! 

[Deleted User]

Since you haven't lived with your sister on a day-to-day basis in a while, maybe it would be a good idea to ask your parents what their "action plan" is if they were the ones around when she had a medical issue that needs to be dealt with.  This way you can work off of that and have one in place for yourself for the trip you'll take with her. 

In the event something should happen, it might also be good to understand what her insurance covers / doesn't should you have to go to a hospital with her.  Many insurance companies will allow you to go to the nearest hospital (regardless of whether or not they're in or out of network) in an actual emergency, but require you to start making arrangements to have yourself moved to an in-network hospital as soon as you are stable / conscious. 

It'd be awful to take her to the closest place but end up saddling her (or your parents if she's on their insurance plan) with astronomical medical bills simply because you weren't informed (and because insurance companies suck- sorry to anyone here who works for one....) and kept her at an out of network hospital for days.

Good luck and I hope she is able to come and that you have a great time with no stress!

flutteringinfl

Thank you everyone! I just got myself a nice fattening comfort food lunch (that might make me regret it later), and trying to drown myself in work.

novella1186

Sending you good vibes and hugs! I really hope everything works out for the best! 

NYCMercedes

I hope she's better and you both have a widly wonderful four days.

dolewhipper

Good vibes being sent!

novella1186 gif in my head. I hope you made FP+ in case she does get to come? (I don't know with her condition if she qualifies for the new GAP since it's changed.)

flutteringinfl

@dolewhipper Yes, FP+ is booked! I also don't know her GAP situation. We're renting a wheelchair but she can stand and walk as long as it isn't for too long. Honestly, I'd rather her come now if possible than wait because even if it's crowded, at least it's cool and we'll have a nice hotel room to retreat back to if the crowds get to be too much. She doesn't do well in heat.

We booked the room through DVC points though, so if she can't come and I don't just go we'll be eating that cost.

dolewhipper

flutteringinftmyers I suggest going to City Hall to see if she qualifies for Disability Access Service Card. Will be a wealth of helpfulness when at the park. They have different kinds of cards depending on her needs.

And DVC? How lux! Jealous over here

lovedryn

Lots of positive vibes your way!

flutteringinfl

dolewhipper said:

flutteringinftmyers I suggest going to City Hall to see if she qualifies for Disability Access Service Card. Will be a wealth of helpfulness when at the park. They have different kinds of cards depending on her needs.

And DVC? How lux! Jealous over here

Haha we rented points. Not owners ourselves. But that's sort of why I was so nervous; wasn't sure what the policy was.

BUT that brings me to my update. So a little while later, she basically got sent to the emergency room by her doctor, so now she's there and waiting for a battery of tests and my parents are leaning more towards her not being well enough to travel. They assure me that she's not in any sort of immediate danger, it's just that if she's already having issues healthwise, especially with her lungs, which this appears to be related to, then adding the physical and emotional stress of traveling is not good.

So the park tickets can be used any time, and the plane tickets were booked with Southwest, so that money can be reused later, no problem. My concern was more with our hotel rooms. We booked through a Disney Vacation Club (timeshare) owner, instead of directly through Disney, and that method is a little less flexible than traditional hotel room bookings. So I was worried that if we couldn't go this weekend, we'd be out a good chunk of change. I called the woman we rented from, and she was SO nice. She told me that I can cancel the reservation up to 24 hours in advance and rebook within a certain window, and she is happy to arrange that for me so we don't lose any money. She can't refund the money because she already spent it, which I understand. But I said I'd wait a day or two to see how sis does, and let her know.

If sis can't travel this weekend, my dad and I discussed an alternate plan. Because I work in higher ed, I get two weeks off for winter break, and one week off for spring break. Originally, sis was going to come down here for Disney trip for the first part of my winter break, and I was going to go up north to visit the family for spring break. So we might switch it; I'd go up north for the time she would have spent down here, visit her, ask her to be my MOH, and we'll rebook the hotel for spring break.

So it sounds like things are under control. I'm feeling a little stupid for convincing my parents to go with such an inflexible hotel option (saving money is great, but not if you have a party member with unpredictable health problems!), but I'm still feeling much better about everything. Sis is doing a little better it sounds like, and hopefully they'll be able to diagnose and treat what's ailing her very soon.

dolewhipper

That's so awesome the DVC member is being helpful with the situation

I really like the alternate plan; this weekend is supposed to get insane. So not only will your sister be a bit more healthy but she will have the energy for the parks.

Don't beat yourself up about renting the points; I'm not sure if you've ever stayed in the DVC rooms but they're AMAZING and it sounds like this member is awesome. Plus there is a ton of room which will be nice if you rent a wheelchair for your entire stay. You can rebook the airfare and room for Spring Break and not have to worry about it for a few months 

ETA: Hit the comment button too quickly. I hope your sister gets our of the hospital and breathing better soon!

flutteringinfl

dolewhipper said:

That's so awesome the DVC member is being helpful with the situation

I really like the alternate plan; this weekend is supposed to get insane. So not only will your sister be a bit more healthy but she will have the energy for the parks.

Don't beat yourself up about renting the points; I'm not sure if you've ever stayed in the DVC rooms but they're AMAZING and it sounds like this member is awesome. Plus there is a ton of room which will be nice if you rent a wheelchair for your entire stay. You can rebook the airfare and room for Spring Break and not have to worry about it for a few months 

ETA: Hit the comment button too quickly. I hope your sister gets our of the hospital and breathing better soon!

Yeah, I've rented DVC points twice before. It's AWESOME. I wish we could do it for every trip but so many of our visits are last minute weekends so it's usually not practical. We currently are booked for the Wilderness Lodge (favorite Disney hotel since I was a tyke), and I'm hoping we can rebook there, but if not I'd be happy pretty much anywhere except Saratoga Springs (have had friends stay there with bad experiences multiple times).

I'm texting her right now. She's still waiting for tests. Arg. I guess the triage system dictates she doesn't get seen unless she's bleeding from her eyes or something. Grumble grumble (I know, I know, but she's my sis so in my opinion she should always be seen first). I told her, "Love ya! You're my hero." Almost sent, "Love ya! You're my herp."

dolewhipper

flutteringinftmyers said:

dolewhipper said:

That's so awesome the DVC member is being helpful with the situation

I really like the alternate plan; this weekend is supposed to get insane. So not only will your sister be a bit more healthy but she will have the energy for the parks.

Don't beat yourself up about renting the points; I'm not sure if you've ever stayed in the DVC rooms but they're AMAZING and it sounds like this member is awesome. Plus there is a ton of room which will be nice if you rent a wheelchair for your entire stay. You can rebook the airfare and room for Spring Break and not have to worry about it for a few months 

ETA: Hit the comment button too quickly. I hope your sister gets our of the hospital and breathing better soon!

Yeah, I've rented DVC points twice before. It's AWESOME. I wish we could do it for every trip but so many of our visits are last minute weekends so it's usually not practical. We currently are booked for the Wilderness Lodge (favorite Disney hotel since I was a tyke), and I'm hoping we can rebook there, but if not I'd be happy pretty much anywhere except Saratoga Springs (have had friends stay there with bad experiences multiple times).

I'm texting her right now. She's still waiting for tests. Arg. I guess the triage system dictates she doesn't get seen unless she's bleeding from her eyes or something. Grumble grumble (I know, I know, but she's my sis so in my opinion she should always be seen first). I told her, "Love ya! You're my hero." Almost sent, "Love ya! You're my herp."

That made me burst out laughing in the middle of my hotel's lobby.

I absolutely LOVE WL! SS just reminds me of Stepford Wives. Creepy. WL club level is my favorite place ever.

flutteringinfl

My mom and I got upgraded to WL club level once. We were only there two nights but it was AMAZING. If I ever make a bajillion dollars, definitely going club level.

flutteringinfl

Update: So sis was doing very well yesterday, except for coughing, which wasn't a big concern. Things were looking good! Then this morning she woke up with all kinds of nasty system. My mom went over and texted me to say she's experiencing autonomic crisis symptoms (her nervous system going out of whack), so go ahead and cancel the room.

I called and took care of that; will double check to make sure everything went through well and hopefully find another date to visit soon. I'm really, really bummed and sad for sis. She really is an awesome kid, you guys. I feel so helpless when I can't do anything to make her feel better.

So right now I'm waiting for my dad to be free so I can talk to him about maybe doing a last-minute trip up north to see everyone for the time she would have been down here. Flights are going to be wicked expensive, so I don't know if we'll be able to swing it, but we'll see. In the meantime, my main concern is her getting better. But I promise when we do go, I'll post some sweet pics (if you want to see).

Waiting an hour before I get to go home and collapse on the couch. Itching to call Mom to ask her how sis is doing but don't want to get in the way.

levioosa

flutteringinftmyers said:

Update: So sis was doing very well yesterday, except for coughing, which wasn't a big concern. Things were looking good! Then this morning she woke up with all kinds of nasty system. My mom went over and texted me to say she's experiencing autonomic crisis symptoms (her nervous system going out of whack), so go ahead and cancel the room.

I called and took care of that; will double check to make sure everything went through well and hopefully find another date to visit soon. I'm really, really bummed and sad for sis. She really is an awesome kid, you guys. I feel so helpless when I can't do anything to make her feel better.

So right now I'm waiting for my dad to be free so I can talk to him about maybe doing a last-minute trip up north to see everyone for the time she would have been down here. Flights are going to be wicked expensive, so I don't know if we'll be able to swing it, but we'll see. In the meantime, my main concern is her getting better. But I promise when we do go, I'll post some sweet pics (if you want to see).

Waiting an hour before I get to go home and collapse on the couch. Itching to call Mom to ask her how sis is doing but don't want to get in the way.

I'm so sorry to hear your trip was canceled.  I hope your sister recovers quickly.  Sending you hugs, and warm wishes. 

flutteringinfl

levioosa said:

flutteringinftmyers said:

Update: So sis was doing very well yesterday, except for coughing, which wasn't a big concern. Things were looking good! Then this morning she woke up with all kinds of nasty system. My mom went over and texted me to say she's experiencing autonomic crisis symptoms (her nervous system going out of whack), so go ahead and cancel the room.

I called and took care of that; will double check to make sure everything went through well and hopefully find another date to visit soon. I'm really, really bummed and sad for sis. She really is an awesome kid, you guys. I feel so helpless when I can't do anything to make her feel better.

So right now I'm waiting for my dad to be free so I can talk to him about maybe doing a last-minute trip up north to see everyone for the time she would have been down here. Flights are going to be wicked expensive, so I don't know if we'll be able to swing it, but we'll see. In the meantime, my main concern is her getting better. But I promise when we do go, I'll post some sweet pics (if you want to see).

Waiting an hour before I get to go home and collapse on the couch. Itching to call Mom to ask her how sis is doing but don't want to get in the way.

I'm so sorry to hear your trip was canceled.  I hope your sister recovers quickly.  Sending you hugs, and warm wishes. 

Thank you It's definitely more her trip than mine, though I was still looking forward to it. But it wouldn't have been much of a trip if she was sick the whole time.

southernbelle0915

All the *hugs*!! 

anjemon

I am going to echo all the hugs. Sorry she's feeling crappy, but I'm glad you can get everything rescheduled.