Starting to Learn:DAS ETHICS.

[mamabunny]

I am trying to wrap my head around all of this! Disney Pro here. I can close my eyes and instantaneously be walking over the bridge at Discovery Island, AK, or headed to France, or from HM to Tom Sawyer. This is brand-new and trying to imagine all options.

Most of our trips have been in summer, due to kids and now adult teacher daughter who melts down if we contemplate going without her. But this trip is to celebrate my 65th bday. I got old! We will start in Halloween and end in Christmas. 2 nights on auto train, 2 at AKL, a night or 2 at US for Grinchmas, and 2 weeks at the Vistana, which we love.

Newly minted Incredipasses, prior to diagnosis.

Since I have been so blessed with good health up to now , I knew nothing about DAS, and you all have been so helpful. It is a long time till October,and I am now adding trip insurance to plans. I think what I understand is that DAS might be helpful for a few specific attractions. It sounds like my better option might have to be stacking LLs for park days and visiting during vampire hours, out of the sun. And hope closing times are extended. The time will change while there, which I never thought I would welcome.

Hey - sorry to hear about your diagnosis; I have PMLE, which means I don't tan, but I do blister!

Just here to say that you should *definitely* work with your medical team regarding the trip; they may have resources specifically for you.

I hope you have a fantastic trip!

 

[erinch]

Unbelievably, I’ve been able to schedule a consult in July with the blistering skin disease group at Penn Medicine in Philly, an hour from me. It takes longer than that to get into my local dermatologist. Which should tell me a lot more. The doxycycline is kicking my butt, that is for sure.

 

[Starwind]

I'm sorry to hear of your diagnosis and hope you are able to get some good answers and resources at your visit with the specialists.

In consultation with your medical team's advice, I strongly recommend looking into sun protective (UPF 50+) clothing and wide-brimmed hats from reputable companies. One of the best is Coolibar ( https://www.coolibar.com/ ). There are some others who are also top of the line, Solumbra is one ( https://www.sunprecautions.com/ ). LLBean, Lands End, Eddie Bauer, Outdoor Designs, Columbia all sell quality UPF 50+ clothing. You want quality clothing from reputable manufacturers because you want assurance that the clothing really is UPF 50+. You also want clothing where the UPF is "baked in" as opposed to being an after production treatment that will wash out by 40 washes, especially given the cost of quality UPF clothing.

One trick I use is layering... so I can have a normal tshirt and then have a UPF lightweight hoodie or jacket over it. The tshirt I change out each day, but the hoodie/jacket I reuse each day. With the right fabric choice, the hoodie or jacket can actually be cooler that not wearing it, especially since the hot burning sun is not hitting my skin. Wearing long sleeves, long pants, gloves (full or fingerless) and a wide-brimmed hat means there is very little skin left exposed; Coolibar has additional accessories that cover those areas too, if needed.

One final note to consider: "shade" still has a lot of UV rays bouncing around in it, especially reflection from the ground, and can be deceptive as people tend to think it is much more protective than it actually is. While it is worse on a beach or on water, it is still an issue elsewhere. Share helps (and is cooler!) but don't let your UV guard down just because you are in the shade.

 

[mamabunny]

Unbelievably, I’ve been able to schedule a consult in July with the blistering skin disease group at Penn Medicine in Philly, an hour from me. It takes longer than that to get into my local dermatologist. Which should tell me a lot more. The doxycycline is kicking my butt, that is for sure.

I'm really sorry. The Doxy helps me, although I am on low doses, and I am now also on high doses of vitamin D (among other precautions) that has given me a small measure of relief. But like my friend @Starwind, I also concentrate on what I *can* control (for example, my clothing) and work to make sure I am using common sense protections. Think about things like: UV window tint on my car & home windows, heavy curtains on windows, no direct sunlight allowed in to the house or office, etc.

I call myself "Queen of the Mole People" because I tend to do most things that I can either before dawn or after sundown!

 

[erinch]

Thank you so much for the tips. I’m being very low key around my family and coworkers, but suspect this is a safe place to say how much I am reeling. I live all year for the summer months to be out on my patio and tending my plants, and in my flip flops. I am a bit in the stages of grief, I think.

 

[mamabunny]

Thank you so much for the tips. I’m being very low key around my family and coworkers, but suspect this is a safe place to say how much I am reeling. I live all year for the summer months to be out on my patio and tending my plants, and in my flip flops. I am a bit in the stages of grief, I think.

I think it's a safe assumption that you are grieving. Just remember that you will find ways to do things that would have never occurred to you before. I now spend lovely evenings on the patio, under the glow of our strings lights, listening to the water in the fountain, and tending my plants. We do more in the hours close to sundown, and after; my hubby was even able to shift his job so that he works 2nd shift; we are now those people who are cooking out hamburgers at midnight! It's kind of romantic and a little eccentric, but we make sure that we don't wake the neighbors, and we go on.

I don't have to like how I have to live, but I have chosen to not let this steal my joy. I'm still doing the things I want to, just in a different way, and a different time of day.

I'm not a professional counselor by any stretch of the imagination, but I'm going to encourage you to talk openly about how you feel with your family. There are many reasons to do so, but for you I think the most important one is that they can't help you if you don't tell them how you really feel about this.

I went through many years - too many years - of trying to be strong and silent and holding it all in, and when I finally cracked and melted down and told them exactly how I felt, how sad & lonely my life felt because I was watching the entire world go by during the day, they were instantly ready to help me find new ways of doing things. They were also really p-o'd at me for not telling them sooner, and for spending so much time grieving alone when I could have had their support and love.

I had forgotten that a burden shared is a burden halved. It literally felt like the weight of the world had been lifted from me.

It sounds like this is all very fresh and scary and sad for you. I am truly, really sorry, but you aren't alone, and if you can let your family know how you feel and why, maybe you can figure out together how to do the things you love, as a family, together. You won't know until you try.

(((Hugs)))

 

[erinch]

Goodness, mamabunny, thank you. I’m turning 65 this year. My husband of 35 years is turning 77. His anxiety issues are less well-controlled and his feelings get exhausting, lol. I am going to take him with me to see the specialist in July, so we both hear what is needed to know. I did manage to plant all my plants with gardening sleeves, mesh shoes, a hat and later in afternoon so gave myself a gold star for beginning to adapt. And also, WTH?

 

[Timandalicia]

Hello! I have just gotten results that confirm bullous pemphigoid, which is a rare skin blistering disease. I have a 3 week trip (annual pass) schedule in Oct/Nov, and am trying to wrap my mind around what this means for my life, and the trip. The meds I am on cause photo-toxicity in me, which means I need to severely limit sun exposure, even with sunscreen.

This means I can wait in lines that are indoor or after dark, but would rule out outdoor queues in sun. Which are a lot of queues, but not all. I just tried to do a DAS crash course, but couldn’t find anything about if it is appropriate to request DAS if you would need it for circumstances like mine?

I am 2 days into this, and apologize if there is lots of info that I didn’t find. Thank you! Erin

Yes you need it.
I hope treatment and adapting your environments goes well for you. Hang in there.

 

[Debbie Jean]

Goodness, mamabunny, thank you. I’m turning 65 this year. My husband of 35 years is turning 77. His anxiety issues are less well-controlled and his feelings get exhausting, lol. I am going to take him with me to see the specialist in July, so we both hear what is needed to know. I did manage to plant all my plants with gardening sleeves, mesh shoes, a hat and later in afternoon so gave myself a gold star for beginning to adapt. And also, WTH?

I know this is an older thread… and I actually responded months ago but life is ironic sometimes. I was just diagnosed with… bullous pemphigoid. After all the biopsies and treatments I’m finally starting to feel better but like you working on wrapping my brain around what this means moving forward.

How are you feeling? How did your appointment in Philadelphia go?

Definitely going back and rereading suggestions from this thread!

 

[erinch]

Debbie Jean,
I just saw your response. Ack! So sorry!
I have a wonderful specialist in Philly, who doesn't look old enough to have a driver license, but is a whiz.
I am managing relatively well on colchicine as an antiiflammatory, and lots of topical and dental steropid pastes and rinses. Message me if you'd like to converse more. The thing that is disconcerting is how unpredictable this is. One day things are great, and I get up the next morning with blisters in mouth and on skin.

We are now headed to WDW, after having to delay 6 months because my husband broke his hip.
This morning I had my DAS pre-certification, which will let me limit my waiting time in direct sunlight and better control how much crowds I am in. All I needed to explain was the concerns I have with my ability to be in queues. It was very respectful and speedy.

NOTE FROM MODERATOR: removed what poster specifically said to be approved for DAS.
Guests need to be prepared to briefly discuss their concerns with waiting in the regular line

 

[erinch]

Thanks moderator for the edit! I am new at this!

 

[gypsy_at_heart]

Hello! I have just gotten results that confirm bullous pemphigoid, which is a rare skin blistering disease. I have a 3 week trip (annual pass) schedule in Oct/Nov, and am trying to wrap my mind around what this means for my life, and the trip. The meds I am on cause photo-toxicity in me, which means I need to severely limit sun exposure, even with sunscreen.

This means I can wait in lines that are indoor or after dark, but would rule out outdoor queues in sun. Which are a lot of queues, but not all. I just tried to do a DAS crash course, but couldn’t find anything about if it is appropriate to request DAS if you would need it for circumstances like mine?

I am 2 days into this, and apologize if there is lots of info that I didn’t find. Thank you! Erin

So, my advice to you is not to ask on disboards if you need/are eligible/should have DAS. Everyone has an opinion, they often conflict and no one here makes the decision. I’d honestly suggest doing the online assessment. Just know that they don’t care about diagnoses etc, they just need to hear why you can’t wait in line and how DAS would fix that.

I’d also say not to be overly proud if this is something that really could help you. I get DAS for a medical issue that effects me very sporadically and unpredictably. I didn’t do it for years because I felt guilty about getting DAS. Then I had a medical emergency in line, they had to shut things down… it was a whole catastrophe. And when I was apologizing over and over it was a CM who actually told me that I should get DAS and shouldn’t be worried about it.