GRRRRRRRRR I HATE LE..........
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Kitty, bummer!!!
What a lot of issues with the stupid sleeve! You sound like a candidate for a donning aid to protect your arm so it doesn't strain the injured areas. There are two types. The Easy-slide and Slippee are slick sleeves you slip over your arm, pull your compression sleeve over it, then pull the Slippee out with the attached tabs. The other type is easier on your skin and doesn't require any heroic attempts to get the Slippee out from under the compression sleeve. An example is the Ezy-As. You position the sleeve on the devise and then slide it up your arm and it lays the sleeve down right on your arm with no tugging or pressure. When I first tried it I thought it was sort of silly and unnecessary, but now I use it all the time -- just makes life easier. And no fat lip from smacking myself in the face! Here's the section on donning helps, with links to all the products:http://www.stepup-speakout.org/Helping_you_don_(put_on)_your_garments_
I actually like the seams on my sleeves because it's easy to keep the sleeve from twisting as I put it on. Can you position the seam differently so it doesn't irritate the wrong spot?
Hoping things only get better and better!
Binney0 -
Thanks Benny. I saw one on line somewhere that you actualy keep it hook up to a table and then just stick your arm through it. I think I will order that when our tax money comes back. It sure would make my shoulder and mouth not hurt.
I think I will get use to the seam but it will just take time. I think just like stocking seams in the toes. Somedays they are fine and others days they just bug the tar out of you. I will try changing it the next time I get frustrated.
Now if they could just do something for my horrible memory. Got my shower, got dressed and walked right out the door without my sleeve today. I guess that's what I get for being in a rush.
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I have read that a few of you wear the tight shirts as well as sleeves, but not at the same time.... could you please tell me where you got them and what brand did you get? thanks
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I ordered the Wave sleeves and a trunc garment I'm going to try around my chest, or cut up and stick in my bra!!! Willing to try anything!! ahhhhck!
Spring.
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I only saw one truncal "garment' - it looks like a binder. Is this the one? Are there others? The photo posted above doesn't seem like the same item as the catalog's binder to me. Maybe I'm not looking at it right. I'm confused. Is there just one truncal item?
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Did you check out step up speak outs list? I am big and I found somethng at my local Catherines store that works great. Our clinic says get a spanks.
http://www.stepup-speakout.org/Compression_camisoles_lymphedema.htm
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KC, the photo above is of the bilateral wave sleeves. The belly/middle/trunc one is here. And there are other places than this site to buy it out there.
https://www.store.lymphedemasleeveco.com/index.php?dispatch=categories.view&category_id=166
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Jo, can you give me a link or more info on the DVD from Lebed?
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Jo, true confession time: usually when I do Lebed I don't have to do the self-MLD. The reason is that, for me, the opening section of the DVD and a couple of the others acturally provides a very gentle skin-stretching routine, in the proper order and at the proper speed, that seems to work as well (or better) than my (probably very flawed by this time) self-MLD. (Though I'll admit to getting impatient with how slow she does those exercises -- but then I get impatient with how slow I have to do the MLD too. Guess I haven't learned much patience -- sigh!
) The stretches also get my back better than I can do it myself. I'm not saying this will work for anyone else, just that it works well for me. So I'd guess you could do it before or after, whichever you're more likely to do -- compliance is a tough thing, and whatever we can do to set things up so it's easier to do it is good.
Another great thing about the Lebed DVD is, when you do it early in the day it gives you that warm, righteous glow of accomplishment for the rest of the day.
Let us know how you like it when you get used to it!
Binney0 -
Hi Ladies,
I'm sorry if I'm blind ... I'd like the link to those DVD's - I'd like to order one too ... it may be on here, but I can't find it!
Thanks!
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I think this is the same one they are talking about.
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And they sell it on Amazon:
When I do it, it feels great. Why don't I do it more often??
Kira
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Binney, MLD should be slow?
Oh dear.
Well, my LE therapist does the treatments slowly but didn't say anything about the MLD or exercises being slow. They are working so I guess it's OK. I got my sleeve almost 2 weeks ago and everything seems OK. It's a Jobst custom sleeve and gauntlet. It's comfortable and I've gotten the hang of putting it on. The only thing that bothers me is that I'm more comfortable with it than without it.
Leah
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This is a great thread. I am ordering the Lebed DVD!! Thank you for the link...
Do any of you here do Yoga? I've noticed that yoga helps, (the gentle stretching) but I have issues with inversion. Do any of you? So anything going up-side-down causes me issues. Down dog, shoulder stands, anything that dumps the blood towards my arm pit! Wondering if any of you have also noticed this?
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I bought it too! Thank you all for posting the links!
Springtime - YES to your question! I go to a yoga/thai chi/pilates class and I've tried the inversions and it causes me to flair EVERY time! I most recently tried it last week because I've been doing some weight training and doing OK with it and thought maybe I could do those poses ... but no. The inversion, like you said is bad for me as well as anything that puts weight on my pecs. I don't know if that will get better with time ... but so far, anything I do that requires pec work is bad for me ... cleaning out my cat's litter boxes, vacuuming, planks, downward dog... any of that is bad for me. You're not alone! It used to really depress me but now I just focus on what I CAN do ... and I go deeper in the leg poses and work harder on everything else and just do modifications on the things that hurt me.
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I'm interested in purchasing one of these Lebed exercise tapes. Looking at the suggested sites, I can't figure out which one(s) to order. Is there a specific dvd title you are using?
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Springtime, I also do yoga. My yoga instructor says that if a pose is a problem for the LE to not do it - only do what your body can do at this time. My LE is very minimal in my hand and I haven't worn my gauntlet in several months without any changes in the swelling.
Sheila
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KC-I ordered her DVD, the link I put up on Amazon--her first VHS tape was made into a DVD and she also released a less expensive class that I haven't seen. I like the one I ordered (I'd borrowed the VHS from the library and it's just one work out with lots of swinging hands) the DVD is broken into segments and I mix and match.
Springtime: downward dog, or any pose that puts too much pressure on your arms can be problematic.
We've been hoping for a yoga for LE DVD...
Sheila--that's great that your hand is doing so well!
Kira
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Springtime, I have been wearing the Silver Wave double sleeve for about a month now. I love the feel and also when air hits it, it is cooling. I work 12 hour shifts and was worried that I would get too hot. The only drawback I have experienced is if you don't put it on just right, it will drive you nuts in the armpit area.
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Jo, I think she says that in hopes of not piling on the guilt for those who don't get to it every day. The idea being that some is better than none. Also, she's also dealing with women newly out of surgery, and people with other health problems that require a more easy-going approach. I do the opening and a couple of other sections (I vary it) every day, and it's no worse than doing MLD daily.
By the way, since you can do the entire thing sitting in a chair if need be, it's obviously not aerobic unless you want to make it that way. I bounce or march throughout and for some exercises use 2-pound hand weights to beef it up a bit -- all depends on my energy level and mood. I've found it amazingly adaptable.
Leah, so glad your new garments are "just right"! As long as your MLD routine is working well for you, then you're doing it just fine. But you might want to try it slower and see if it improves your outcome (or if you have a flare, slower MLD can be a faster way to reducing it!) The reason is that our lymph system actually has a rhythm. The lymph vessels are not just like a tube, but are segmented into tiny sections called lymphangions, with "flaps" at both ends that open to allow lymph fluid to enter, then close to keep it from backing up. As these lymphangions fill they produce a stretch reflex that causes a contraction to ease the lymph fluid along. So there's a beat, and it's slow. When you do MLD you want to go slowly enough to allow the lymphangions to work with you. Anyway, that's why the Lebed opening exercises are so infernally slow
-- so it coordinates with the work the little angions are doing.Sheila, brava! I just love good news!
Glad so many of you will be exercising along with me -- makes the routine much more enjoyable!
Binney0 -
I must drag out my Lebed DVD.
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My LE therapist said both Lebed and MLD should be done slowly - her saying is that lymphatic fluid is slow and stupid - it goes where you push it, but moves slowly. My LE therapist also echoed what Binney said about why you need to move slowly - when you stretch the skin, you are opening the little lymph vessels and when you let the skin relax, it moves the fluid into those vessels. If you just stroke and don't stretch the skin, you're not opening the vessels so the fluid doesn't move out. If you stroke too strongly you squash those vessels down (they're right under the skin) and they don't take in as much fluid. Just imagine that you are moving a very thick fluid gently through your system - you have to move it slowly in order to move it at all.
I do a modified MLD in the morning while I'm still in bed then I do the first 15 minutes of the Lebeds before I do my regular morning exercise. I find it's a nice warmup. But I got tired of watching the tape over and over again - that lady in the back who keeps yammering about stuff when you can't hear her drives me nuts!!!
So I wrote down all the exercises and keep that paper by the TV, and now I can do the exercises while watching "Morning Joe" every morning. Like many of the other morning shows, they have a clock on the screen, so I always try to check the clock to make sure I'm taking the full 15 minutes and not going too fast. I like Morning Joe a lot better than the tape! (Yes, I'm dating myself - I know it's really a DVD, but I still call stuff like that a "tape". 
) And Jo, I think everyone of us here agrees with you about the lack of LE education we received (or didn't receive) from our doctors and surgeons. It's not rocket science to pass these things along, but it seems that most of the medical community just doesn't get it.
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Mary--that is just brilliant: lymphatic fluid is slow and stupid--perfect!
And your explanation of why you do MLD slowly with the skin stretch--it's just wonderful.
I can't stand the woman off screen on Lebed either--half the time I can't hear what she's saying. The guy with the scarf is a bit creepy, and the blond with the perpetual smile seems odd, but the exercises are great.
I do these Norton exercises every morning, and after all this time, I still have to read the list....
Oh, on the topic of LE and the medical community, I sent the page from stepupspeakout for providers to the team that treated me--with huge trepidation--and two days ago, I got this email from the woman who runs their LE clinic about how thrilled she is with it, and will be circulating it to all the medical staff and wants to meet with me to brainstorm. Last time we met, I was very upset with her LE therapist who was telling me I couldn't have LE because it never starts in the hand....I think we will just pretend that never happened--if I can educate that group, then the women who come after me will benefit.
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Kira
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Yoga ladies, I am able to do pec work, I actually do weights at the gym and a lot of chest and arm work - and this alone seems to actually help my LE. I started slow with the weights and worked my way up. I noticed early on that weight training helped my LE - and when I asked around on the boards, I was pointed to reserach that was showing this. My RADs onc says it's like a pumping motion, and I've wondered if the puffing up of the muscles actually help drain the tissues. (?)
For me, it's the inversion or up-side-down stuff. I figured it out when I borrowed a head-stander from my yoga teacher. I love going up-side-down, but that's when I figured out that the issue! I previously had been baffled because sometimes yoga would help me, other times not. So now I do a brief down dog and then do plank. If we're supposed to stand and hang our body down, I just go until I'm flat back. I'm trying to figure out modifications!!
Thanks for all your input ...
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Darn! Hi! I just got out of teh hospital---agian...its been 7 months since my last IV antibiotic infusion for cellulitis. It was really bad this time, the pain was horrible. I woke up Sat and couldnt move my arm. Wasnt too swelled, spots started around noon, by 6 we were on our way to the hospital. I am much better now, but have to do IV antibiotics for a few weeks at home, actually I have a fanny pack with a pump and it pumps the fliud 24/7. I get a new bag every morning at the hospital. Honestly, I havent admitted this to anyone, but I am sure I got teh reoccurence because I haev been chewing my nails and cuticles alot lately, too myuch stress at work...any ideas on how to STOP that habit? I swear its gonna be teh death of me! hugs terri
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terry, they put a "bitter" on birds to stop them from biting their nails. i used it, but can't remember the name. gonna look for it, and will post if i find it..
i've found a new passion, and its helping tremendously, with Le and neuropathy.. a DVD.. easy yoga for arthritis. by peggy caffe, i think thats' how you spell her name.. Kira,it really helps with the hand LE.. she concentrates alot on hands and feet. i have LE both places, and my hands are full of ortho arthritis. its done sitting, and standing.. shows a down dog with a chair, so i don't swell doing it, and thats' the pose that helps my back the most. also have lebend, but i like this one, even better, for now. still using an "air walker" it lifts the legs up, so you d just the down stroke. returned my rebounder last yr., but am thinking of getting the oone with the grasb bar again..
Binney, my LE therapist is working with me again; double duty.. she's doing LE drainage tricks with me for my hands, mostly, and the new truncal area from the dog ear surgery; AND she's gonna be able to help me with my legs from the MS with the same rx.. maybe this willbe a good summer, after all! she agrees with you, that "less is more " for me. now, i'm fighting with my ins. to pay for the OTC garments, not custom. with a letter from my onco, it might work. im getting the Wave myself, out of pocket, since so many of you have had such good luck.. here's hoping! 3jay
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3jays,
I donated to the local PBS station to get that DVD. It's not here yet, but it looked great on TV, and I am so glad to hear that it is working for you. Thanks for mentioning it!
Dawn
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Awe Spring.... I did no know you had LE all over too.... BOO.:(
I was told Not to use weights... and it I HAD to... I needed to never lift to fatigue or any strain. So.... in other words.. NO POINT... that is not going to take my arms back to PRE BC.
I so walk with 3 pd weights... and seem to do ok..... maybe I will just step up to 5 pds..... then 8.... with time... hmmmmm.... it is very interesting how our Rads and PT are different. My PT says little to no weights at all.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
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Terri,
How horrible--I hope you're feeling better. I used to nail bite in college, and somehow I just stopped--it is so hard to stop a habit. Maybe some full finger gloves for a while?
Let us know how you're doing.
3jaysmom--that yoga DVD sounds wonderful--I'm going to look for it.
I think I found it, by Peggy Cappy: on Amazon
http://www.amazon.com/Yoga-Rest-Us-Easy-Arthritis/dp/B003UH3RQO
Kira
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Too funny! I love watching the people in the background (though I agree that the one who always makes "witty" half-heard comments in the background is pesky). What I love about them is that they're always goofing up, so they make me feel good. (How's THAT for perverse!
) If anyone is interested in becoming a Lebed exercise instructor, they now offer the training on-line. If I weren't wallowing about in a chemo-brain swamp I'd love to do that -- think how fun it would be to share that in person with women recovering from their bc treatment!
Springtime, interesting observations on the inversions. Gravity (like air pressure) seems to play a large part in this, yes? Bummer!
Terry, goodness! I'm so sorry! Next time (if there IS a next time, and I sure hope there's not
), don't wait til 6:00! How about a visit with a LE-savvy infection disease doc? Having had two major bouts with this in such a short time sure qualifies you for some expert help. Please do keep us posted! Hugs, prayers.3Jays, I am SO GLAD you're getting attention to the whole shebang! That must be a real relief to you (well...also pretty time-consuming
). Keep us posted on your progress.Estepp, maybe "never lift to fatigue or strain" refers to the need to go slow about increasing weight and reps. VERY slow. You can strengthen your muscles without fatiguing or straining them by adding weight or reps at lengthy intervals. The problem, of course, is overdoing it, like we could before bc with out any serious repurcussion. <Sigh!>
Be well!
Binney0
