New Website--SteupUp-SpeakOut.Org

BRAVO!  Jane, this is such an awesome idea.  Thank you all for taking the time to put this together.  I, for one, am especially excited that this site is now available to women facing all these issues for the first time.

Hugs
Bobbie

Jane, Kira, Otter, and Binney,

Thank you all for this new site with so much information in one, easy-to-access place!  I do not yet have LE, but that is mostly thanks to your good information on bc.org and not to my surgeon, who told me I had nothing to worry about (and who told me he hadn't removed any lymph nodes in my bilat "except maybe one or two in the breast tissue itself"... so imagine my outrage a year later when the next surgeon I saw, after I fired the first one, gave me my path report and it said "axillary node dissection" 12 nodes on left and 9 on right!).  So I came here to see what to do next, got a sleeve and glove for flying and other situations, and began to take better care of myself.  I would have been lost in a world of anger if not for all of you, and this new site will add to my ability to move forward in a healthy way. 

I recently had a colonoscopy and was dreading the arguments I'd had last year with an anesthesiologist minutes before surgery about not using my arms (He scorned my information, until I told him that unless he could guarantee he would have LE for me, if it occurred, he wasn't using my arms!)  This doctor and his staff were prepared by my phone call ahead of time, and there was no argument at all.  We shouldn't have to advocate our own health care with health care providers, but thanks to you all, I now can do it, and I am much more confident! 

Thank you from a bc sister who wishes you the very best in life!

Dawn

WOW... this is fabulous ... a fantastic resource for anyone who wants to know more about LE - or for anyone living with LE ...   thank you for pulling this all together and for inspiring others !! I'll spread the word of this site on twitter. 

Doreen  

This a brilliant site - well done everyone who has worked so hard on it!

In the words of a good friend, "You Rock!"  Thanks for the LE site and the support on the these boards, as well as PMs.  I just don't know where I'd be without all the help I've received from my sisters here at bc.org. 

Thanks, all, for all the kind comments (and the links, Barbara!)

Shrink, during a Therapy Intensive (when you're initially working with a therapist several days a week and getting a Manual Lymph Drainage massage and wrapping at each visit) the protocol is to stay wrapped all day except for shower, followed by massage, lotioning and re-wrapping. The therapy typically lasts two or more weeks (depending on the extent and responsiveness of the LE). The all-day wrapping allows the lymph vessels to have help pumping lymph fluid, because they provide extra pressure on the skin surface for the muscles to move against -- which is the primary way that lymph fluid is pumped through the vessels. After that period of therapy, when the swelling is as reduced as it can be, you're fitted for compression garments to wear during the day, and wrapping usually continues at night (though some women order special night garments instead, and others can go some nights without wrapping).

If that's not what your therapy is like, you might want to ask why not. The real question, though, is whether or not what you're doing is working to bring the swelling down and keep it that way.

Clothes over a wrapped arm can be a problem, especially in winter when jackets and coats make it awkward and drafty. A zipper-front sweatshirt works for me, but it doesn't get all that cold here. You can wear jackets and coats without putting your arm in the sleeve, but of course your activities are limited (to say the least!) Raglan sleeve blouses work well, or just full-ish sleeves. I have a few items I can wear, but a lot don't work with a wrapped arm. Stretchy fabrics do, as long as they're not so tight they bind anywhere. The awkwardness of wrapping 23/7 only lasts a few weeks, but it sure does seem like forever. When I was done with my therapy there were a couple of shirts I'd worn over and over that I never wanted to see again!

Nightgowns -- you can find them with big full sleeves, but not easily. Or cut off the cuff if there's fullness in the sleeve but not in the cuff. I wore a t-shirt and 'jama bottoms during therapy, but now that I have to wear a full night compression vest and two sleeves, all I need to add is the bottoms. (Only, since I used to wear nightgown, not pajamas, that's been a big adjustment.)  

What have the rest of you done about the clothes-over-wrapping issue?

Binney

I've been getting massage 2x week for several months.  The swelling has slooooowly gone down and my arm is definitely softer.  I'll have to ask why I wasn't told to keep wrapped the rest of the day and night. I can do the massage myself now although not as well as the LE lady. I also wasn't told about lotion except not to use it during massage.  I'd be lost in a maze of tape, bandages, foam, sleeves, etc. without Binney, the rest of you.

Jane, Kira, Otter, and Binney,

Thank you, thank you, thank you!

I am not on line much anymore, so I was thrilled to find your beautiful, well researched and well organized website.  Wish that I had access to all this wonderful info and support when I began this journey 4 years ago--what a difference it would have made!  This will be an excellent resource for all seeking info and living with the cursed LE.

Thanks again,

tessu, thank you for posting here, so we can all be reminded of the amazing work that these women did for all of our benefit. Stepup-speakout has become the go-to resource for so many of us. I'm so grateful!