GRRRRRRRRR I HATE LE..........
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been a while since i have been on this site. arm somewhat in check but do have a question??
my LE was mostly in upper arm and side trunk and back...Over the past few weeks it seems to have gone to my lower arm and at the same time the upper arm is okay.
Does it travel? and if so can one section be worse than the other on a given day?
My back and trunk are always swollen.,,Any advice on how to helpt that
I hate this! Such a horrible reminder of what we all had to deal with...
Sorry to vent! Especially with holiday so close.
On happier note: I have my hair back and that is a good thing!
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Binney and Kira, Thanks so much for all your useful information. I haven't been on this site for awhile so I'm just getting caught up. You've given me such wonderful info to think about. I have a problem finding a bra large enough to wear. My LE therapist keeps telling me to buy larger but I can't find anything larger for the band. I would normally be a 38 and am now finding 42 isn't large enough. I even use bra extenders at the max & it's still too tight. MY LE therapist says to buy only inexpensive for now but it's hard to find anything larger than a 42 with a D cup. I'm continuing to look. BTW, if it helps anyone my therapist also recommended instead of a breast form for lumpectomy, use a shoulder pad and that's what I do. It's amazing how it stays in place and looks just right. She said a form would be too heavy on my shoulder. This is perfect and if I wear a bra that will leave a decided mark on my side I wear one of those tiny baby wash clothes folded up so small & thin but that works too.
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Just got back from the PT. I got my night glove. Woot! No more wrapping. Also got a new, better sleeve and glove. It feels pretty comfortable. And it blends in a little better with my skin. Woot, woot!
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njbhwgirl,
LE is "dynamic" (per Andrea Cheville of Mayo Clinic) and it can be patchy as well. It definitely can "travel" and some spots just retain the fluid.
Binney is the truncal expert, have you seen this page?
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
I think the key to controlling truncal LE is the right compression garments, and some MLD.
Vent away--it stinks.
Fitz: great idea for a lumpectomy prosthesis--a shoulder pad. Boy, we're always learning from each other. The baby wash cloth is a great tip also.
Jo-5: we all do the best we can. Sometimes we tire of the battle...
Kira
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Kay--Happy to hear things are better with new garments.
Fitz--My insurance just paid $300 for a lumpectomy prosthesis when I could have been using a shoulder pad!!! Mine is not very heavy though and very comfortable. It has relieved all of the pain under my breast.
Jo-5--Hang in there.
Becky
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Have you ever looked at PinkBra.Com?
Here is one that goes up to a 50F.
http://www.thepinkbra.com/classique761.html
I have ordered sleeves and foam foobs from here without any problems. The sleeves usually take a few weeks.
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I saw my GYN today for a yearly. He was quite shocked at my leg. He thinks there may be up to 20 pounds of fluid on this leg. I thought maybe 5. I had to tell him it actually looked better today....well not now after being gone all day and out shopping. Even though he didn't seem to know a whole lot about LE he did say to keep it elevated as much as possible! AT least he did acknowledge that there is such a thing as LE.
Hope everybody has a great Christmas.
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for all my swell sisters who celebrate chanuchuaSP? good yontif!!3jays 0 -
Happy Hannukkah!
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Happy Hannukkah, Merry Christmas, and holiday greetings to all the wonderful women here! Best wishes for good health!
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And special wishes to Laura! Thank you so much for starting this thread, which has been a great gift!
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Becky, I'm sure the $300 was well spent for your bra. The lumpectomy/mastectomy bras I've looked at all have a seam across the m iddle and I like to wear t-shirts so I've gone the way of the shoulder pad, but as my therapist says, whatever is comfortable is what works for us. I'm going to try some other ideas so I'll always have backups.
Another thing my therapist suggested for me was to check myself over everyday wherever I have LE because I've missed having red dots which sometimes is the start of a LE infection.
Then I'm to start right on antibiotics but one time I didn't know there was anything wrong and she said it probably was through my body by the time I went to her but fortunately it seemed to be okay and I didn't have any further problems. I had no idea how careful I have to be about this.0 -
Just had to bump this up
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hi ladies, just an update.. went to the new fitter, today. she was good at measurements, etc.. had no real knowledge other thsn the course gottfreid and jobst puts her thru... did give her the info for speak pit, step out, or is it the other way around, and this thread... she knew of neither, so the info is out there!!!and, she was good with listening, which was imp to me.. we ordered two sleeves, and one set of black gloves.. if they're ok, we then order the next set... hurrray!! i'll soon have one to wear, and one to wash...
she did queation why the light compression... she'd never heard of anyone being compression sensitive. i would never have known without our oen dear Binney, who im so grateful for!!!.. Happy New Year, to my swell sisters all........3jays
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Happy New Year to you all. Here's hoping it's not a 'swell' year for us.
I want to thank each and every one of you for generously sharing your knowledge, experiences, support and opinions.
3jays~good luck with these new sleeves. I think I'm going on nearly 3 months waiting for a custom fit from Juzo. It's so frustrating isn't it? It would be a bit easier not to need a custom. (At least I assume it's easier
.) Wishing you all a healthy, peaceful New Year.
Gentle hugs.
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Wishing Swell Sisters a happy and healthy New Year. Thanks for all of the support and great information shared here!
Joy0 -
Joy, so glad you're back with your family--I read you were looking for a Lebed tape--if you email Sherry Lebed Davis, she'll email you back, and a lot of her moves are on YouTube.
http://www.gohealthysteps.com/contact/
here's one of her YouTube videos
http://www.youtube.com/watch?v=k6f7N8dtJLM
Wish you were closer so I could take Pilates from you
Kira
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3jays, my New Year's wish for you (and all of us) is a great fit on your new garments!
And I want to echo the thanks to everyone for sharing your experiences and expertise with all of us here.
Together we can make a difference!
Binney0 -
Happy New Year everyone!
It seems that I need to wear a glove with my sleeve or my fingers start to swell. I WANT something cute, but I haven't seen any cute sleeves with matching gloves. Any suggestions on where to get matching sleeves and gloves that are cute or colorful?
I had a juzo sleeve but it kept falling down and now I have one with silicon and it is working great (except the overlay of the glove and sleeve pits my wrist so I keep adjusting it so the pit isn't just really deep in one place)
There are some REALLY cute sleeves out there. Where are the cute gloves?
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HAPPY NEW YEARS to all!!!may we keep this crap under contril for 2012.. and yeah!for the new fitter for me. i'll letcha know how it goes!!!
I want to thank you all, from the bottom of my heart... the profs out there know NOTHING comoared to you swell gals!!!!...3jays
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Happy New Year to all!
Here's to an unswell year!
Leah
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Absolutely! Happy, Healthy New Year to everyone. Hope it's an unwell year with lots of chocolate.
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Annette, try this link http://store.lymphedivas.com/store/pc/viewPrd.asp?idproduct=2973&idcategory=29
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Annette, I do wish Lymphedivas made gloves, but they only make gauntlets. Since you need finger protection that just won't cut it. There are several companies that make gloves in colors, including Barton-Carey, Gottfried, Bio-Concepts and Juzo (tho Juzo's color choice in gloves was limited last time I checked). Those all have to be custom ordered No nice patterns like Lymphediva's makes, but you can order colors that would go with a Lymphediva sleeve.
I should tell you that just a few short years ago there was no Lymphedivas and very few colored garments. Everybody was stuck with medical-beige. We've come a long way, and a lot of the improvements have come directly from patients contacting companies and suggesting what they need. We have found almost all of them very open to patient input, so don't be shy about using that "Contact Us" button they all have on their websites!
Together we can make a difference. Onward!
Binney0 -
Hi everyone,
I ended up flying without a sleeve. I tried the shrug sleeve I bought on line and just like Kira said it made me swell more around the lower arm. I went swimming everyday in Forida to keep things under control and it all worked out.
Also, to Fitz, I'm a really big lady. I found an inexpensive @25$ bra with no underwires/seams in a 48DDD (they have all cup sizes up to a 48) at a large womens store called Avenue - www.avenue.com. They are all over the states if you need to try them on or the style I like is called a soft caress soft cup. Very comfortable. I hope this helps. Oh I just looked and there are all cotton ones onsale for 19.99! Now you've got me shopping LOLHappy New Year to all!!!
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Don't forget the Farrow glove comes in sand and black and they are soooo comfortable
http://www.brightlifedirect.com/p2385/Farrow-Microfine-Compression-Glove-20-30mmHg/product_info.html
I tend to wear alot of black or patterned shirts with black in them and a black sleeve with the black farrow glove looks very classy!
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kira Thanks for the Lebed information - a number of us on the November Mast thread have been discussing LE, as you know. It seems as though some are starting to experience symptoms. I will order the Lebed DVD and incorporate it into my practice. Wish I could share pilates with you too - it's my passion and has definitely helped in recovery.
My trip back to Florida is next week, and I'm hoping that it will be a brief visit just for follow up doctors' appointments. I am anxious about finding an oncologist here in Budapest too, as medical care here is different. Being away from my kids and hubby has been very difficult, I'm grateful to have had the past few weeks with them for the holidays.
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grrrrrrrrrrrrrrrrrrrrrrrrr started with my leg today. 11% difference and she too thinks that I will loose around 20 pounds by the time treatment is over. She is using the grey foam on my leg...thinks it works better than the fluff. Time will tell.
1 sockinette, 1 layer of grey foam, 1 white bandage, 5 short stretch bandages, and atop cover are now on my calf for two weeks. grrrrrrrrrrr
leg is throbbing in a few places. I am going to do my best to keep it on till I go back wed. She will start massaging then. Today was all about getting the stuff ready and the foam cut.
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Kitty, I too have just been diagnosed with LE in my right calf -- ugh!
It's tempting to sit with your leg up while wrapped, but the idea is to get some gentle exercise in. What are you doing for a shoe on that foot?Grrrrrrrrrrrrrrrrrrr is right!
Hugs,
Binney0 -
Valgal: Thanks so much for The Avenue info. I just looked it up and will go there and try a few on. They look perfect! I can't thank you enough.
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