Suggestions for visiting with psoriasis

[chasadchick]

My husband has severe psoriasis and psoriatic arthritis. He hasn't been to Disney since elementary school (he is still morning the closing of the 20,000 Leagues Under the Sea ride, to give you an idea of how long it has been.) and didn't have psoriasis at the time.

Does anyone have any advice on making sure the trip is enjoyable for him? We are going in early Sept and he is really concerned about the heat and amount of walking. (He refuses to use a wheelchair or similar device. He doesn't want to give up his independance by not walking on his own.)

 

[ttintagel]

Hi! I also have PA with psoriasis. It's hard for me to give much blanket advice, since I don’t know exactly which symptoms your husband’s showing at the moment or how severe they are, and my own have fluctuated so much over the last 25 years between debilitating and complete remission, with some coming and going at completely different times.

One of the things I do for myself is something you can't. The high heat and humidity means that going in September simply is not an option for me. I'd love to go that time of year because of the low crownd and prices, frequent free dining offers, MNSSHP, and my birthday, but I know my joints won't tolerate it. I don't think I'd even risk it during one of my complete remissions.

When I've got lots of plaques going on, the sun helps, as I'm sure you know. But the dry Western sun helps a lot more than the damp Florida one. (In Vegas and at Disneyland, my skin cleared 100% even though I wasn't in remission.)

Since my WDW trips were planned far in advance, I worked with my rheumatologist to tweak my medication schedule so I didn't have to take my Humira or Methotrexate while I was on vacation, which was nice.

Last year, I found myself taking a lot of stretch breaks in lines. I'd been having particular trouble with my hands, hips, and lower spine in the year leading up to the trip; the hand exercises in particular were easy to do while waiting. For floor stratches, I'd just find the nearest out-of-the-way sretch of pavement and plop.

If he's taking any pain meds/NSAIDS, I'd advise staying on a strict schedule instead of waiting until it hurts. Set an alarm on your phone or watch because you're at The Distractiest Place on Earth.

Miss some park time for middday pool/bathtub/bed time. You may end up with fewer total hours in the park, but more of them will be actual fun, quality time.

Read the FAQ section about wheelchair/ECV rental, and keep the info with you when you go. If it turns out he needs to use one, you'll be able to get him one ASAP. Stress that you know he's perfectly capable under normal circumstances, but that a day at WDW is not normal circumstances, and that it's too much for plenty of people without autoimmune diseases.

 

[chasadchick]

Hi! I also have PA with psoriasis. It's hard for me to give much blanket advice, since I dont know exactly which symptoms your husbands showing at the moment or how severe they are, and my own have fluctuated so much over the last 25 years between debilitating and complete remission, with some coming and going at completely different times.

One of the things I do for myself is something you can't. The high heat and humidity means that going in September simply is not an option for me. I'd love to go that time of year because of the low crownd and prices, frequent free dining offers, MNSSHP, and my birthday, but I know my joints won't tolerate it. I don't think I'd even risk it during one of my complete remissions.

When I've got lots of plaques going on, the sun helps, as I'm sure you know. But the dry Western sun helps a lot more than the damp Florida one. (In Vegas and at Disneyland, my skin cleared 100% even though I wasn't in remission.)

Since my WDW trips were planned far in advance, I worked with my rheumatologist to tweak my medication schedule so I didn't have to take my Humira or Methotrexate while I was on vacation, which was nice.

Last year, I found myself taking a lot of stretch breaks in lines. I'd been having particular trouble with my hands, hips, and lower spine in the year leading up to the trip; the hand exercises in particular were easy to do while waiting. For floor stratches, I'd just find the nearest out-of-the-way sretch of pavement and plop.

If he's taking any pain meds/NSAIDS, I'd advise staying on a strict schedule instead of waiting until it hurts. Set an alarm on your phone or watch because you're at The Distractiest Place on Earth.

Miss some park time for middday pool/bathtub/bed time. You may end up with fewer total hours in the park, but more of them will be actual fun, quality time.

Read the FAQ section about wheelchair/ECV rental, and keep the info with you when you go. If it turns out he needs to use one, you'll be able to get him one ASAP. Stress that you know he's perfectly capable under normal circumstances, but that a day at WDW is not normal circumstances, and that it's too much for plenty of people without autoimmune diseases.

Thank you so much! He does have clearence to not take MTX, while we are there. I will set an alarm for his pain meds, that's a great idea.

We are staying at the Poly, so I'm sure he will be more than thrilled for a midday pool break.

Thank you again.

 

[Piper]

Renting an ECV from an outside company will allow him to retain his independence. He will be in charge--not have someone pushing him. Also, has he thought how him not being able to enjoy the parks affects everyone else's vacation. From my perspective, that is a selfish attitude. (And yes, I have my own ECV.)

You should also read the FAQs at the top of this board. There is so much information there--and contrary to what you may read from others on this board and elsewhere on the internet, it is true!

 

[GadgetTheInventor]

I can only offer up advice on how I deal with my eczema, which may or may not help with your situation...

1. I take flip flops to wear in the shower and around the room to protect my feet from anything yucky.

2. I have a bunch of cotton gloves (Minnie gloves?) for wearing at night and during the day if I need to.

3. I carry a sliver of real non-perfumed soap around with me so I don't have to use what is provided in restrooms.

4. I also carry hand cream for after washing my hands and throughout the day.

5. I pack a small container of laundry detergent or soap nuts with me in case I need it during my trip because I can't use regular detergents.

6. I make sure not to let myself fall behind in preventative and maintenance care no matter how busy I get.

7. I bring enough supplies for a worst-case scenario of a flare-up.

 

[Jedana]

I can only offer up advice on how I deal with my eczema, which may or may not help with your situation...

1. I take flip flops to wear in the shower and around the room to protect my feet from anything yucky.

2. I have a bunch of cotton gloves (Minnie gloves?) for wearing at night and during the day if I need to.

3. I carry a sliver of real non-perfumed soap around with me so I don't have to use what is provided in restrooms.

4. I also carry hand cream for after washing my hands and throughout the day.

5. I pack a small container of laundry detergent or soap nuts with me in case I need it during my trip because I can't use regular detergents.


6. I make sure not to let myself fall behind in preventative and maintenance care no matter how busy I get.

7. I bring enough supplies for a worst-case scenario of a flare-up.

I usually do most of these. (I have PA/Psoriasis.) I live here in FL, and it is brutal on my joints--I feel like I've aged 15 years in the 7 years we've been here.

Other things I do:

I change my socks/shoes often. I will take 4 pair. One pair for Monday am, one pair for Monday pm, one pair for Tuesday am, one pair for Tuesday pm. Back to the pair of Monday am for Wednesday am, etc. I also use Monkey Butt Powder in my socks (helps keep the sweating down). I wash my feet when I change the shoes/socks.

(TMI--I also use the MBP in my sports bra, under the "girls" and on the crack of my behind, and thigh/groin creases--friction and sweat problem areas, for me.)


I do "PT" type exercises throughout the day. Stretching is key.

I try to avoid a lot of dairy, fatty red meats, processed foods. I like to eat "colorful" veggies/fruits--carrots, squash, spinach, blackberries, etc. It seems like my attacks are less severe and less frequent when I eat this way. May be a coincidence, but I'll stick with it anyways.

 

[ttintagel]

3. I carry a sliver of real non-perfumed soap around with me so I don't have to use what is provided in restrooms.

4. I also carry hand cream for after washing my hands and throughout the day.

5. I pack a small container of laundry detergent or soap nuts with me in case I need it during my trip because I can't use regular detergents.

Oh, yes! These are all essential (for me) things I forgot to mention! I bring all my own shampoo, soap, laundry, toiletry, and skin products from home.

It makes me a little nervous having to put the shampoo and conditioner in checked luggage, but I double-bag in the toughest Ziploc in the outer compartment of my suitcase, and so far I haven't had a problem. I suppose I could order it online and have it shipped, but I usually only bring part of a bottle so I don't have to bring a bunch home or abandon the unused portion. I could pour some into travel bottles, but I don't trust those not to leak; or into emptied out sample-size bottles of other brands, but I don't trust those not to retain traces of scent. Reading that in black and white makes me feel paranoid! You may find that those ideas work fine for you.

 

[Random Ninja]

Oh, yes! These are all essential (for me) things I forgot to mention! I bring all my own shampoo, soap, laundry, toiletry, and skin products from home.

It makes me a little nervous having to put the shampoo and conditioner in checked luggage, but I double-bag in the toughest Ziploc in the outer compartment of my suitcase, and so far I haven't had a problem. I suppose I could order it online and have it shipped, but I usually only bring part of a bottle so I don't have to bring a bunch home or abandon the unused portion. I could pour some into travel bottles, but I don't trust those not to leak; or into emptied out sample-size bottles of other brands, but I don't trust those not to retain traces of scent. Reading that in black and white makes me feel paranoid! You may find that those ideas work fine for you.

I really recomend not using the generic travel bottles. The only time I ever used them was on a trip from Florida to Australia. I was the only one in a group of 35 who used the generic bottle to put my shampoo in and mine was the only one to break. I had to borrow shampoo for 2 days before I could get to a store for more.

You might want to try minimus.biz. They sell travel sized toiletries and other items individually. Shipping is usually free in the US if you buy a certain amount.

 

[this0is0me]

I Used to have alot of trouble with my psoriasis flairing up.
But I changed my diet and use a cream that helps out alot.
The combination of both have made my psoriasis barely noticeable.
DR.pagano's diet for psoriasis is a great book and must read for anyone that suffers from psoriasis. also dermasis cream has been a life saver for me. If anyone is interested in looking into these 2 I hope it can help you out aswell


ipsoriasis.net for The threatement/cream
amazon for the book