Sun allergy (PMLE) and late spring trip

[mamabunny]

OK gang. I need some advice!

Typically, we are in the Parks in either October through February. However, our daughter wanted to take me to WDW for Flower & Garden for an early Mother's Day trip in late April. (Did I ever tell you how wonderful my daughter is? I am so very fortunate!) So, it's another Girls-only trip for us!

I have been diagnosed (via a biopsy) with PMLE. Most of the time at WDW I control it by using UV resistant clothing, a delightful wardrobe of hats and lots of sunscreen... so. much. sunscreen. LOL

BUT this will be late April - so not only will UV values be higher, but so will the daytime temperatures. My normal "cover everything from head to toe" strategy will result in heat stroke when the temperature rises over 75 degrees... so - any ideas?

I know there are plenty of umbrellas and parasols I could carry, as well as the Sportbrella that I could clip on to Angus, my faithful ECV. But I don't want to block others view, and umbrellas and parasols are no fun to hold all day while trying to drive one-handed, especially if it's windy...

Because I am a 3L (Large Lovely Lady) I also find it hard to locate the kind of lightweight, cool UV resistant clothing that I know exists.

We have (obviously) skewed our plans and FP's to early morning and post-5pm times, but (for example) I have never gotten to watch Festival of Fantasy all the way through - and I would love to finally do that on this trip. I don't want to just hide at the Resort from 11:00 am to 5:00 pm every day!

Thanks in advance - I really do appreciate any ideas or suggestions!

 

[Starwind]

I still go by cover everything I can in the heat of the summer. I find I am actually COOLER that way than short sleeves and sunscreen; plus hot sun directly on my skin causes a burning feeling [different than sunburn].

I really like the Coolibar brand, and they have some Plus sizes.

One the the things I like to do in hotter weather (but it works yearround) is wear a coverup over my top. So I can wear a normal non-UPF top (short sleeve, long sleeve, whatever I want) underneath a Coolibar long sleeve coverup (my favourite style is also hooded). Though this isn't the model I have, something like this: http://www.coolibar.com/product/Women/Plus-Size/Cabana-Hoodie-Plus-Size/pc/2240/sc/2193/156097.uts . The nice thing with this solution is I can change the shirt I wear under it each day, but don't need to change the coverup as often so don't need as many of them. We also do laundry during our trips, which helps too. A patterned one can avoid, lets just call it, sweat spots from showing.

For umbrella holding, consider a Brella Bag. I really like mine and it is hands-free ! http://brellabag.com/ I use a full water bottle in the bag itself as the counterweight (I do not use the Brella Bag as my real purse, but could if needed).

SW

 

[Kaytie]

What about an umbrella hat? Search Amazon. Hands-free, and uv-reflective.

 

[gap2368]

OK gang. I need some advice!

Typically, we are in the Parks in either October through February. However, our daughter wanted to take me to WDW for Flower & Garden for an early Mother's Day trip in late April. (Did I ever tell you how wonderful my daughter is? I am so very fortunate!) So, it's another Girls-only trip for us!

I have been diagnosed (via a biopsy) with PMLE. Most of the time at WDW I control it by using UV resistant clothing, a delightful wardrobe of hats and lots of sunscreen... so. much. sunscreen. LOL

BUT this will be late April - so not only will UV values be higher, but so will the daytime temperatures. My normal "cover everything from head to toe" strategy will result in heat stroke when the temperature rises over 75 degrees... so - any ideas?

I know there are plenty of umbrellas and parasols I could carry, as well as the Sportbrella that I could clip on to Angus, my faithful ECV. But I don't want to block others view, and umbrellas and parasols are no fun to hold all day while trying to drive one-handed, especially if it's windy...

Because I am a 3L (Large Lovely Lady) I also find it hard to locate the kind of lightweight, cool UV resistant clothing that I know exists.

We have (obviously) skewed our plans and FP's to early morning and post-5pm times, but (for example) I have never gotten to watch Festival of Fantasy all the way through - and I would love to finally do that on this trip. I don't want to just hide at the Resort from 11:00 am to 5:00 pm every day!

Thanks in advance - I really do appreciate any ideas or suggestions!

I know some one with no pigment at all and they live in the Orlando area,

This is what they do

sunscreen and then more sunscreen, they do have the light weight sun protectors ( she is too a 3L, I do love the way you put this ).

I would get an umbrella and just use it when parked to watch things or when going around world show case, ( I like to go during lunch time and then you could head back to the hotel around 2 or 3 and back out to the parks when the sun goes down or maybe a nice indoor ride like soring

fain with a mister



as fair as the parade in the MK where the parade starts on the opposite side of where the river is ( I forgot the name) it is shaded find a spot about 30-45 minute before then when it is over go as fast as you can thought the emporium and watch it again from where the emporium end on MS ( if you this this just right there will not be a lot of people there and you are in the shade and have a cool breeze but some times CM will not let you stand there before it come so you do have to have god timing to see it from here and since the floats are about to go back stage they are not doing all there tricks on them but it is still cool)

 

[mamabunny]

I still go by cover everything I can in the heat of the summer. I find I am actually COOLER that way than short sleeves and sunscreen; plus hot sun directly on my skin causes a burning feeling [different than sunburn].

I really like the Coolibar brand, and they have some Plus sizes.

One the the things I like to do in hotter weather (but it works yearround) is wear a coverup over my top. So I can wear a normal non-UPF top (short sleeve, long sleeve, whatever I want) underneath a Coolibar long sleeve coverup (my favourite style is also hooded). Though this isn't the model I have, something like this: http://www.coolibar.com/product/Women/Plus-Size/Cabana-Hoodie-Plus-Size/pc/2240/sc/2193/156097.uts . The nice thing with this solution is I can change the shirt I wear under it each day, but don't need to change the coverup as often so don't need as many of them. We also do laundry during our trips, which helps too. A patterned one can avoid, lets just call it, sweat spots from showing.

For umbrella holding, consider a Brella Bag. I really like mine and it is hands-free ! http://brellabag.com/ I use a full water bottle in the bag itself as the counterweight (I do not use the Brella Bag as my real purse, but could if needed).

SW

For me, the burning feels like it is being melted off by a blowtorch when I am in direct sunlight. (My family calls me "Queen of the Mole People LOL) I have to moderate the blinds and curtains in our home, especially in the summer months - and forget getting a Gel manicure; last one I had put me down for almost a week afterwards (because of the UV light to cure the Gel)

I've been looking at Coolibar - since I had no direct experience with the brand, I've been a bit hesitant, but it's good to know that you have had good experiences with them. I like your idea of a coverup, and then changing out the shirt underneath. And that Brella bag is *genius* I'm going to have to get one of those!!! Even if I didn't use it at WDW, it would be *awesome* for State Fair, going to the Zoo... that's so clever! Thanks!

 

[mamabunny]

I know some one with no pigment at all and they live in the Orlando area,

This is what they do

sunscreen and then more sunscreen, they do have the light weight sun protectors ( she is too a 3L, I do love the way you put this ).

I would get an umbrella and just use it when parked to watch things or when going around world show case, ( I like to go during lunch time and then you could head back to the hotel around 2 or 3 and back out to the parks when the sun goes down or maybe a nice indoor ride like soring

fain with a mister



as fair as the parade in the MK where the parade starts on the opposite side of where the river is ( I forgot the name) it is shaded find a spot about 30-45 minute before then when it is over go as fast as you can thought the emporium and watch it again from where the emporium end on MS ( if you this this just right there will not be a lot of people there and you are in the shade and have a cool breeze but some times CM will not let you stand there before it come so you do have to have god timing to see it from here and since the floats are about to go back stage they are not doing all there tricks on them but it is still cool)

Thank you! I would be interested in knowing what brand of sunscreen they use, if it's OTC. You can never have too many recommendations!

I have one of those little lipstick fans that they have sold at the Parks; it actually puts out a LOT of air! I like those because they are light, and don't take up much space in my bag.

We have heard from others that there should be some shade over in ?Frontierland? and maybe there is some around Liberty Tree Tavern too? It's been years since I have been around there in the daylight! I kind of dread the notion of needing to arrive an hour early to get a spot, but if that's what we need to do...

 

[gap2368]

y

Thank you! I would be interested in knowing what brand of sunscreen they use, if it's OTC. You can never have too many recommendations!

I have one of those little lipstick fans that they have sold at the Parks; it actually puts out a LOT of air! I like those because they are light, and don't take up much space in my bag.

We have heard from others that there should be some shade over in ?Frontierland? and maybe there is some around Liberty Tree Tavern too? It's been years since I have been around there in the daylight! I kind of dread the notion of needing to arrive an hour early to get a spot, but if that's what we need to do...

I will butcher the name of the sunscreen but it is nutragena that she uses ( I will try to text her tomorrow and ask her where she got her shirt from ( it is very thin light weight and like I said she is a 3L too)

yes it is in frontier land depending on the day some times you can get there 30 minutes before and have a half way decent spot I once sat in the place where they sell the DVC ( that little kiosk ) they have a nice fain there too. your DD will have to stand or sit on the ground.

 

[mamabunny]

I will butcher the name of the sunscreen but it is nutragena that she uses ( I will try to text her tomorrow and ask her where she got her shirt from ( it is very thin light weight and like I said she is a 3L too)

yes it is in frontier land depending on the day some times you can get there 30 minutes before and have a half way decent spot I once sat in the place where they sell the DVC ( that little kiosk ) they have a nice fain there too. your DD will have to stand or sit on the ground.

Thank you @gap2368! You are so sweet!

 

[Disney_traveler]

Lane Bryant also has a lot of breathable type workout clothing with their LiviActive line that might be helpful. I have a lot of jackets that I wear even during the summer and the pay are the breathable/moisture wicking stuff

 

[Starwind]

I use Vanicream and Blue Lizard (sensitive skin variety) sunscreen; both are mineral sunblocks vs chemical sunscreens. The only ones I can use without a really unpleasant reaction.

I love Coolibar stuff. I have multiple of their things -- clothing and accessories -- and highly recommend them. They have sales *occasionally*, sometimes free shipping (they have that now) other times a % off; signing up for their email list is the best way to find out about them.

MK By the Liberty Tavern there is a nice set of white benches up against the white building. I have parked my ECV nearby and sat on the benches to watch parades. Works well and for the most part am sheltered and out of people's way (people will walk in front along the porch, but they seem to see the benches so stay clear, vs the invisible ECV...).

Another good place I have found is along Main Street as you are going towards the castle, maybe halfway down on the RIGHT is an alcove/little "street" that goes to the right off Main Street. There are a couple shops down it, but there is not a lot of traffic, and it is a dead end. I park my ECV just inside the side street, alongside the building that is castle-side. I can sit and wait there to my heart's content, umbrella if needed, etc. Then, when the parade comes near I can either stand in front of the scooter or move the scooter closer (they will have a tape line on the ground and usually people are on the curb side not the building side of the "walkway" on the sidewalk, so there is room to move closer.

You aren't up close to the curb with either location, so if that is what you want it wont work. But if you are willing to be back a bit, I find they are good places. I pprefer to remain out of the heavy crowd as much as possible.

SW

 

[mamabunny]

I use Vanicream and Blue Lizard (sensitive skin variety) sunscreen; both are mineral sunblocks vs chemical sunscreens. The only ones I can use without a really unpleasant reaction.

I love Coolibar stuff. I have multiple of their things -- clothing and accessories -- and highly recommend them. They have sales *occasionally*, sometimes free shipping (they have that now) other times a % off; signing up for their email list is the best way to find out about them.

MK By the Liberty Tavern there is a nice set of white benches up against the white building. I have parked my ECV nearby and sat on the benches to watch parades. Works well and for the most part am sheltered and out of people's way (people will walk in front along the porch, but they seem to see the benches so stay clear, vs the invisible ECV...).

Another good place I have found is along Main Street as you are going towards the castle, maybe halfway down on the RIGHT is an alcove/little "street" that goes to the right off Main Street. There are a couple shops down it, but there is not a lot of traffic, and it is a dead end. I park my ECV just inside the side street, alongside the building that is castle-side. I can sit and wait there to my heart's content, umbrella if needed, etc. Then, when the parade comes near I can either stand in front of the scooter or move the scooter closer (they will have a tape line on the ground and usually people are on the curb side not the building side of the "walkway" on the sidewalk, so there is room to move closer.

You aren't up close to the curb with either location, so if that is what you want it wont work. But if you are willing to be back a bit, I find they are good places. I pprefer to remain out of the heavy crowd as much as possible.

SW

Thank you @Starwind - that is all VERY helpful information! I have been shopping Coolibar tonight, and will definitely look for the Vanicream and Blue Lizard next!

I think we are going to head back to the LTT area, or Frontierland if necessary simply because the idea of bench in the shade is too good to pass up! I know exactly where you are talking about on Main Street; It is such a lovely little oasis from the crowds on Main Street, and I have long wished that they would have put a couple of those cut-de-sacs on either side of Main Street - think of all the extra shopping we could have had! LOL (not to mention cool, shady retreats!

You are truly a gem to help so much! Thank you again!

 

[Euby]

Thank you! I would be interested in knowing what brand of sunscreen they use, if it's OTC. You can never have too many recommendations!

I've been known to get a sunburn going through the drive-thru at home. SO when I go to Florida, I start with Neutrogena's Ultra Sheer® Body Mist Sunscreen Broad Spectrum SPF 100+. I spray a good layer on before leaving the resort. It doesn't feel greasy like a lot of other sunscreens. In the parks, I use their Ultra Sheer® Face + Body Stick Sunscreen Broad Spectrum SPF 70 to re-apply throughout the day. It basically looks like a deoderant stick. It's easy to apply without getting too messy and I don't risk spraying someone in the face.

I'm going to check out the Coolibar shirts as well. I'm also of the 3L variety.

 

[bopper]

I think I have the PMLE too..but for me it is only if I get too much sun too fast...which is usually when I go on vacation to Florida.
Here is a blog of someone that has tried a few products.
http://mommy2connor.blogspot.com/2012/07/pmle-polymorphic-light-eruption.html
Its a bit old but has some ideas.

I think the thing to do is to try to expose yourself gradually to sun each season.

 

[Sarahraegraham]

I think I have the PMLE too..but for me it is only if I get too much sun too fast...which is usually when I go on vacation to Florida.
Here is a blog of someone that has tried a few products.
http://mommy2connor.blogspot.com/2012/07/pmle-polymorphic-light-eruption.html
Its a bit old but has some ideas.

I think the thing to do is to try to expose yourself gradually to sun each season.

I think i may have PMLE as well, but also thought it was odd that I can be out in the sun here in PA for a couple hours, drive for hours and have no problems at all, then when I go to Florida covered in sunscreen and a sun hat, my skin is like nooooo. Lol. I am very fair and have never tanned but I am wondering if I should try to sunscreen up and take to the tanning beds for a couple months leading up to our next vacation. Has anyone with this condition tried that with good results?

 

[bopper]

Check out using Heliocare pills (in addition to sunscreen and clothing).

 

[mamabunny]

@Sarahraegraham and @bopper I have tried several "incremental" sun exposure schedules, with no success as of yet. Sadly, the older I get, the more pronounced my symptoms and side effects are, and at my last derm appointment, my doctor said she felt strongly I should just use the strategy of "duck and cover", meaning "duck" into the shade whenever possible and "cover" everything that I can LOL

There are some prescription medications that do help some folks, however I am allergic to at least one of the ingredients in every one of them! Additionally, one of the medications that I have to have (to live, breathe, remain above ground) can cause/add to sun sensitivities, so it's kind of a double whammy. That medication isn't the cause of my PMLE - my body did that on it's own - but it definitely contributes.

For now, I'm going to have to focus on sunscreen, clothing, and shade, and hope for the best.

If you do believe you have PMLE, see your dermatologist; you can have a biopsy done to find out for sure. Some folks do have trouble going from a lower UV exposure area to the south; other times it can be caused by medication changes. Might be best to work with your doctor to find out what is really going on!

 

[CJN]

FullBeauty carries swim shirts with UV protection that I'm going to use for in the parks (and water rides ). The ones I have are short sleeve but I think I remember seeing 3/4 sleeves, too.

 

[mamabunny]

FullBeauty carries swim shirts with UV protection that I'm going to use for in the parks (and water rides ). The ones I have are short sleeve but I think I remember seeing 3/4 sleeves, too.

Thank you, @CJN! I appreciate the information; I can add a pair of my longer UV gloves to a 3/4 length sleeve, so I'm going to check them out!

 

[DisneyOma]

I think i may have PMLE as well, but also thought it was odd that I can be out in the sun here in PA for a couple hours, drive for hours and have no problems at all, then when I go to Florida covered in sunscreen and a sun hat, my skin is like nooooo. Lol. I am very fair and have never tanned but I am wondering if I should try to sunscreen up and take to the tanning beds for a couple months leading up to our next vacation. Has anyone with this condition tried that with good results?

I used tanning booths to help with sun exposure, ended up with melanoma, and other skin issues. PMLE is not life threatening - melanoma is. Also, tanning is not good for any reason. It's showing that your skin has been exposed to too much radiation.

 

[CJN]

I just saw that Lands End has long sleeve swim tees that go up to size 3xl offering UPF 50 protection. Some really cute ones, too.