lymphedema?

[mickeymom629]

Just wondering if any Disney fans have this in their leg(s) and how they cope with it around WDW.

 

[Tiger Fan]

I have severe lyphodema in my right arm due to a mastectomy with lymph node removal. I always have to wrap my arm when traveling and it's worse in the summer and hot weather. I'm lucky that my arm does not bear my weight all day as those with leg swelling, but still get more swelling with all the walking on concrete. I always make sure to rest often, do not allow yourself to get a sunburn and do manual drainage as often as you can. My best to you!
Lisa

 

[mickeymom629]

Hi Tiger Fan,

I had LE that came and went for many years in my left leg and I didn't really understand what it was. After our 1999 trip to WDW, it swelled and never has returned to normal. On later trips, I have worn a compression stocking (everyday, just like at home now). I don't wear shorts anymore and only put on a bathing suit if we are going to sit around the pool or the one time last trip that we went to Typhoon Lagoon, but I just sat on a lounge chair most of the day, terrified that I would make it worse. I always find shade and wear a strong sunscreen.

I was wondering if anyone else had to deal with this problem too.

I'm so sorry to hear about women who get it after mastectomies since you already have had to deal with so much! There's not much explanation as to why I have it, and that's angering and frustrating too.

 

[AprilsZoo]

Even if you do not normally use one at home, you may want to look into getting (renting there, or to bring with you) a compression pump to use, especially at night. (You know, the funky leg wrap thing that you wear and it inflates in a "massage" type pattern from your toes up to "milk" the extremity and reduce the edema.)

Good drainage and effective application of compression wrapping or garments or both, will be crucial.


Also do a google search on managing lymphedema to find updated info on ways to help minimize its effects. There are lots of tips out there that help some people deal with this and keep it from totally disabling them.

My DSis has LE in her arm from a mastectomy and I have watched her become more complacent in managing it over the last couple years.
But when we are on vacation, and I make her "follow the rules" (elevation, massage/drainage, and putting on her compression sleeve before she even gets out of bed in the morning) her arm is soooo much better. Her complaint, and I do understand, is that the compression sleeve limits motion as much as the swelling does, and it is hotter and more uncomfortable to wear. So, as she sees it, why go thru all that work to still be uncomfortable. On vacation, though, she is more willing because heat and humidity, along with additional activity, do exacerbate the LE and make it much worse -- to the point of her skin actually becoming shiny and her fingers feeling numb -- so the good effects are more visible.

Good luck.

 

[CarrieAP]

Mickeymom629- your post sure caught my eye! I too have had lymphadema in my left leg for many years. It seems to come and go related to monthly hormones, but has been more persistent over the last few months. I wear elastic bandage on at night, but am very selfconsious about it. Hate it when friends comment on how swollen my leg is. Do you have any idea what causes this?

 

[mickeymom629]

 

[Tiger Fan]

Sorry it's taken me so long to get back to this thread - I too hate to wear my sleeve due to it being so very hot. I do use it always when flying or taking long road trips and sleep in it when I'm having trouble. I'm lucky that I can manage mine pretty well right now and it's not keeping me from many activities at this point.
Lisa

 

[mickeymom629]

Lisa, it looks like we might be in WDW at the same time; my family is going the 27th of June, by van, and arriving at CBR on the 28th. On the 29th (my birthday) we are checking into OKW (we are DVC members) for 4 nights. Then we are spending the 3rd and 4th with DH's family in Tampa.
OOOpps. Just a quick edit; I see you may not be going to WDW in July, but somewhere else.

Anyway, is the sleeve the same thing as our compression stocking? I think it is. I am never without it. Actually, I wear two during the day (on the same leg) and one at night. I hope I don't hear anyone's opinion on that, .

Mine is pretty manageable right now too and hopefully I have it under control, but I guess we never know. I go on my treadmill daily ( I have walked 3 miles daily since college--about 20 years ago ) and I just have to deal with the fact that I don't go barefoot and in shorts in the summer (that's the saddest part for me). Planning my clothes for WDW and what to wear around the pools or waterparks is just not as fun as it used to be.

I just wish there was a cure!

Anyway, do you have your next trip all planned? My kids are DS15 and his friend, DS13, DD11 and DS9. We are counting the days!

Debbie