I have some questions

Outfield

So now I am using bandages, and am awaiting a new sleeve and night garment.  It's kind of a relief to be able to be doing something for it.  I am hoping catching this early is helpful in the longrun.  The bandaging is a challenge, but I'm not finding it limits me as much as it looks like it would once it is on.  But I have some questions for those of you with experience.

How often do you wash this stuff?  Mine looks grubby after half a day.  Am I just dirtier than average?  How do you wash dishes or do other wet things?  Do you do them all at once with the sleeve or bandage off, or put something over it?  Do any of you play sports using your arms or lift weights? Does anybody sleep with an arm elevated longterm?

This really sucks.  I'm trying to keep my mind set on just doing what I can do to control it as best as I can, but I'm really resenting the amount of time it takes.  I just don't have time to stretch my big old tight cord and do the MLD and the bandaging, and then all the other stuff of my life. If anybody has an efficiency tips, I"d certainly appreciate them.

Estepp

Please go to a thread called.....

GRRRRRRRRRRRRRR I HATE LE !

I started that thread... and there is SOOOOOOO much info there... and a few of the SMARTEST LE sisters... you will EVER know... they can lead you to help!

Laura

Estepp

GRRRRRRRRR I HATE LE..........

This is the correct link.

A lady named BINNEY..... or KIRA......... will help you sweety. They are angels here ( IMHO)

kane744

Dear Outfield, So sorry you are having to go through this.  It's a challenge that's for sure.  Till Binney or Kira get to you, there's a site called Step Up Speak Out which contains so so much info, including answers to some of the questions you've asked. 

I guess, for me, the first big hurdle was accepting the fact that this is for life.  I'm still dealing with that but not on the same level as in the beginning.  

It's a steep learning curve, but it will come!

kira66715

Outfield, we put a page on stepupspeakout about coping while wearing bandages:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Getting_Through_the_Day_with_a_Wrapped_Arm

I wrap every night, so I wash my bandages--on the warm, permanent press cycle, without fabric softener, in a garment bag, and do an extra rinse and spin before hanging them to dry--once a week. I change my finger bandages about once a week (actually I get an MLD session twice a month, and my LE therapist gives me new stockinette--organic cotton--and I've showed her how nice it washes, and we don't need to use a new piece all the time, and new finger bandages. I did buy a case of transelast, but haven't gone through it. Some people buy the cotton finger wrap by KT, because it is so washable--Binney knows a good therapist in SC and that's all he uses:

http://www.lymphedemaproducts.com/products/fingerandtoewraps.html

Joe Zuther put a page on his blog about care of wraps, and I think it's too much--he wants daily washing of bandages and the foam underwrap.

http://acols.com/lymphedematoday/?p=386

You are at the toughest point right now--you're aware of it all the time, and it does get better.

Thanks for the kind words--but all the women on this forum are amazing: helpful and kind.

Kira

hymil

Welcome Outfield. Sorry you had to join us because of getting LE but glad to hear you have caught it early. Getting diagnosed when your symptoms are marginal can be really hard.  I agree, it does seem like a lot of bother when your swelling isn't advanced, and some days you could wonder is it all worth it, but you have only to meet one person with a grossly enlarged arm, or with major infection from cellulitis, to realise that it really is worth the hassle of preventing it from getting worse. If I'm going to be around another thirty years then i had best look after myself a bit