GRRRRRRRRR I HATE LE..........
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I love most brownies but they are especially good if you make them in muffin tins press a peanut butter cup in the batter before baking. Yum. Binney, the Trader Joe's dark chocolate ones are the best.
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Dawne-Hope about exercising in the water, last night the therapist that was at my local bc group meeting said that just being in the water gives compression so it doesn't matter what exercises you do. That gave our group an idea for our July meeting, we are going to the coordinator's house and do water aerobics at her pool!
Sheila
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Binney, I have this app on my iphone called Lose It. Once you enter your weight loss goals, it figures your daily calorie allotment. Then you enter EVERYTHING you eat and your daily exercises. Being aware makes all the difference but I'm still going up and down though not up to where I was! Funny though, I lost weight and still got this flare. And all this talk of brownies is tempting. Chocolate is my weakness, Well, one of them. Oh hey, here's an idea. Horse chestnut powder in brownies!
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Kane, I started with the Lose it site when Mary/Natsfan posted it. A bit of work, but really helpful.
Aquatic exercises: check out Joe Zuther's blog:
http://www.lymphedemablog.com/2011/01/20/the-benefit-of-aquatic-exercise-for-lymphedema/
Suesam: this is no substitute for GOOD LE therapy, but JoAnn Rovig has self care videos that demonstrate MLD:
http://www.nwlymphedemacenter.org/
We keep hearing about LE therapists who are not doing MLD, not teaching it, not teaching wrapping--it's just not right.
I'm really glad the major LE training groups have joined together to address the quality issue. They're in competition, but doing this for the greater good. Yeah.
Kira
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Jo, count me in as not making it a priority, yet it helps so much--how can we change that?
Kira
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JO - I'm pretty good about doing an abbreviated MLD while still in bed when I wake up, but I was bad about the Lebeds. I finally just bit the bullet and set the ^%#$& alarm clock 15 minutes earlier and do them first thing in the morning before doing my normal morning exercise workout. Now that I've been doing them pretty regularly in the morning, I find that I actually like them and look forward to doing them. They're a good wake up for me, and the stretching feels sooooooooooo good, especially on the shoulders. They're also a good warm up exercise for my normal morning workout.
I HATE getting up in the morning, so giving up that extra 15 minutes of sleep was a major sacrifice for me. But I'm finding that I feel so much better that it's really worth it.
Kane - I love loseit.com. And for those who don't have an IPhone, loseit.com is also a website. The site made me realize how much snacking I was doing - the "it's only 80 calories so it really doesn't count" kind of snacking. But they DO count, and loseit.com very graphically conveyed that to me.
My dh just got an iPhone, so it's good to hear that there's a loseit app for that - I think that will make it easier to track my intake and exercise "on the fly". 0 -
Answer anyone? My LE therapist gave me the written instructions to Zuther's exercises--no verbal info. I happily did them quickly for three weeks. Then I ordered the LeBed tape and realized I was doing them way too quickly. Then I ordered Norton's video and he is even sloooower than LeBed. My question is--if I do LeBed's video (the whole 45 min), does it take the place of the Zuther exercises I have? If I do Zuther's slowly it takes about 35 minutes. Zuther's (and Norton's) are very boring. LeBed also sounds as if she is doing some MLD. Also should MLD come before exercising or after? My therapist gives me no answers to these questions. Thanks. (I have an appt with a new therapist that has been recommended but it isn't soon enough for me). Becky
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Jo, I'm exactly like you where my exercises are concerned. Didn't do 'em yet today, as a matter of fact! Awhile back, when I did 'em first thing after waking and peeing, they were over and done with for the day. I'll have to start that up again. I do try to do the treadmill every day and cause I watch TV while I'm doing that, it's not such a chore.
Kira, Loseit is only a chore for me if I let it go for a couple days and try to reconstruct everything! If I do it as I eat or exerxcise, it takes but a few seconds.
This latest flare has been a doozy cause I had it in my hand pretty badly. My LE therapist suggested I wear a glove for active day time. I did and it helped greatly. In fact, except for eating (is that an activity?), I like them much better than gauntlets but I just ordered some longer gauntlets to see if that will make a difference. I got a size large rubber gloves to wear over the glove when housecleaning, prepping for cooking, etc. My hand is back to normal. Boy, I punched myself pretty hard today when donning my sleeve. Don't you hate it when that happens????
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Thanks JO-5 Have a good trip--wherever. I hope to travel again soon if I can end my 3Xs a week therapy! Becky
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Ladies, I am reading all these posts about exercises for LE, and am getting angrier by the minute........I asked after surgery if there was anything in the way of exercise i could do to avoid LE, figuring stay ahead of it, and was told.............no just do things as you would normally do, other then the glove things, the needle stick, and the BP............Now I am ticked because I have LE, and I'm wondering if doing these exercises when it was a good time to do them would have helped.
This now seems to me like closing the barn door after the horse ran out.............really annoyed with the whole thing.
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Have there been any studies as to whether there is a less percentage of LE in women who have been given pre op precautions for LE than those not given any? Or if our lymphatic systems are on overload pre node removal/radiation we will get it anyway? Just thinking out loud on a rainy day (when I should be exercising).
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Becky, there have been studies about early detection and information, and early intervention with PT, and it does seem to make a difference--some people, in the British Medical Journal study--the majority of women with severe cording, got LE any way, so some of us are just not that great in the lymphatic department.
Kane: my hand is my main issue--and of course I fell and broke it, but thank goodness for gloves.
Re: exercises--I fly through the Norton exercises in the morning--take about 5 minutes, max. When I do Lebed, I do the first part and skip legs/balance. I'm sure my MLD is too fast also.
Mary is right: I need to just do it.
We kind of suddenly are buying a new house--not far from where I live now, but something my dh wants desperately--water access--and the whole process has me not sleeping, cleaning and painting frantically--and I just know I'm a set up for a flare. Deep breathing needs to take over here...
And, I met a woman from these boards at a doctor's office, we'd exchanged info and realized we saw the same person, and she said "Kira?" and suddenly we crossed the cyberboundary. Kind of like when Binney and I met up FINALLY--and realized we'd known each other for years, just not in the same room. And I tried to sneak off with her dog, but he's 85 lb, and she would have noticed...
Kira
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kira - that's so cool that you crossed the cyberboundary!0
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Poor Kira--If I had to move right now I think I would give up. I am having a flare just thinking about it. I hope the new place is worth it! Maybe you can sleep, paint, and clean SLOWLY and turn all of it into LE exercises. Do take it easy!!
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Hi ladies! I've been away from bc.org for a few years; just returned recently due to continuing LE problems. Love this thread! Many of you have expressed my feelings exactly . . . confusion, anger, frustration, etc. I do have one bit of advice for everyone: Ignoring it and hoping it will just go away does NOT work. I'm living proof! After a recent flare-up that led to cellulitis, I'm now visiting my P/T three times a week to try to get it back under control. I also got the Lebed DVD and am trying to make myself just get up a little earlier and do it first thing every morning.
Something new since I was last on here which has really caught my interest is the Silver Wave Sleeve. Do any of you have/wear the bilateral one? Does it have enough compression to really help you? I asked Sue at LE Sleeve Co. if they made the bilateral sleeve with higher compression and she said they don't because it would be too uncomfortable. Would love to hear from anyone who has one of the Silver Waves.
Deb
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Hi folks - I was wrapped for the first time yesterday. The therapist was very patient and did a good job teaching, and hopefully I was a good student as I am not scheduled to go back. (I am paying out of pocket.) I realize that I forgot to ask a really basic question. I read on the StepUP site that I only wash the short stretch bandages as needed, but what about the gauze and fluffy stuff? The gauze on my fingers is quite dirty and I can't imagine putting it back on without washing it, but maybe I am being silly? When I do wash it, what should I do? What temp water? Any special detergent? Can I stick it in a laundry bag unfurled and throw it in the washer or do I have to hand wash it? If I can machine wash, what cycle?
I must say that after two weeks of wearing a Tribute during the day, it was great to be wrapped so I could have some use of my fingers back. Hopefully, I will be able to wrap back up. Thanks KS
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The gauze should be replaced every day. At least that is what my LE PT did. I was told the fluffy stuff didn't need to be washed or rather shouldn't be washed it would tear up. Gee not sure when it should be replaced. I haven't wrapped since the first of the year.
I ate to much salty food over the weekend. Puffy all over. lol That's what I get for given in to Salt and Vinegar chips. Just can't handle extra salt...plus I was on the road all weekend too which doesn't help.
Looking forward to a night out tomorrow for a LE support meeting.
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Hi ladies, just left my BS dr and he said I don't have lymphadema, I know some of you have also been told that and I'm kind of boggled. He said my incisions are still bright red and as long as they are, I will have swelling as they act kind of like a tourniquet. I had cording and had infiltrating and invasive BC. I have been seeing a LE therapist as well as a lymphadema oncologist who both have said I do have it although it is subtle. I am pretty uncomfortable in my back, side and arm. So confused! I would love to think I don't have this but in my gut I feel like I do. Any suggestions?
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hi christine. im 3jays. i had the same scenerio as you do now. i trusted the LE therapist, who is TRAINED to have an "eye" for le; and no political agenda. some, Most drs. don't want to admit le isists, IMHO ... she worked with me, and i've been able to keep it at an acceptable level..WHATEVER that might be!!!! i wear gloves all the time. my hands' the worst, with not just le..neuropathy, and arthritis, so i have to watch out for a "minnie mouse " hand most days... if you forget about it, it'll get out of control, so just ASSUME its' real, and treat it. YOUR"E the only one in your body, so you'd know the uncomfortability that is le.. learn the MLD, and wrapping, and think of it as insurance. you may never need it, but if you do, you've got it..keep cking in here.. these ladies are THE BOMB!!!! 3jaysmom.
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Christine-My BS also said I did not have LE as he only removed two nodes. He did make a referral to an LE PT who said I had Stage 1 LE. I have been wrapped for 8 weeks and hope to graduate to a sleeve soon. My surgeon still thinks it is post op swelling.
Hi 3jays--have missed you!
Becky
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Where is the best place to buy the video's that you are talking about? I have been exercising but careful with the upper body and weights. Still haven't found a good LE therapist.
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This may not be 100% but it seems like someone told me that most male doctors don't believe LE is real & that most female doctors do believe there is LE. NJ
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KS1--Short stretch bandages should be washed and air dried once a week. I use foam instead of the cotton artiflex, and it lasts forever. I replace the finger wraps once a week. I used to wash them, but they're a pain.
Here's a link to lymphedema blog on care of bandages:
http://acols.com/lymphedematoday/?p=386
Zuther says to wash the bandages daily--but my therapist says weekly. He also says to wash the foam padding, and replace it often, and she says that's not necessary if you use stockinette and wash that frequently.
Samsue, the videos are Lebed/Health Steps--they sell them on their site and it's on Amazon as well:
https://www.gohealthysteps.com/store/?productID=3
Kira
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KS, I wash my gauze bandages every time I use them, so I have several sets of them in use at a time (I have bilateral LE so I need a lot of gauze!) I throw them into a lingerie bag with my compression garments, add them to a load of towels, and wash it all on a gentle cycle with warm or cold water and Ivory Snow. Then I take them out of the washer and hang them to dry like this: I lay one end over the bar of a drying rack and use my fingertips to straighten out the edges and I slide it over the bar. Takes awhile, since they're so long, but then they hang nice and straight and I can roll them easily. To dry the short-stretch bandages I roll them up wet -- this straightens them all out -- then unroll them over the shower bar to hang and dry. If "the fluffy stuff" is Artiflex or something similar, in my experience it doesn't wash up well. Which is why I prefer to wear rolled foam under the short-stretch insteayd of the fluffy stuff. The foam lasts a whole long time (at least if you store it so it's not exposed to light, which makes it turn yellow and brittle).
Samsue, here's the website for the Lebed video:
http://www.gohealthysteps.com/store/
Scroll down to "The Lebed Method Focus on Healing Through Therapeutic Exercise and Movement DVD". It's around $25.Jo, like you, I have fits trying to be faithful about doing the Lebed exercises, but when I don't it catches up to me in just a day or two, which is very motivating
. I stuff it into my computer and do parts of it in sections when I need a computer break. After the first node-opening section (which I start with every day) the rest of the sections are pretty short, and I pick different ones every day in order to feel like I have some choice in the matter.
When I get sick and tired of the chatter I turn the sound off and just do the movements.In case anyone is interested, becoming a Lebed exercise instructor is now possible on-line using Skype. It's not free, of course, but it offers you a chance to make some money leading classes and helping other women recover from BC in an enjoyable and even joyful way. (Can you tell I'm trying to talk myself into doing this?!
) There's a teleconference later this month that you can sign up for to discuss the class with Sherry Lebed.Christine, I have lymphedema in both arms, both hands, and across my chest, back and sides -- and my surgeon is STILL telling his patients that he's never had a patient develop lymphedema.
Where LE is concerned, surgeons seem to live on some other planet.Boxermom, thank you so much for your heartfelt reminder that we need to deal with this -- it never hurts to be reminded. I have the bilateral silverwave and I wish I loved it and that it did great things for my LE, but it doesn't. The cuff is long, and just above it is a "gathered" effect that is actually loose instead of giving compression, so I had trouble with swelling in my forearm where the looseness is. I took some tucks in that area and managed to create a more gradient compression, so now that's not a problem (though it sure doesn't look as cool as it did!) Now that I've used it a few times this way, though, I'm finding that because I also have truncal LE, the silverwave causes fluid to pool just in front of my axilla. The next day it is invariably swollen and painful. It looks to me like this results from the over-the-shoulder aspect, which throughout the day pushes the fluid forward out of my upper arm. So I'm bummed.
(Understatement!) But that's just me. Hopefully others are still finding it helpful. Kane, I'm going looking for LoseIt.com -- thank you! I'll let you know how it goes.
Be well!
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Samsue, you can google LeBed excersize, and they sell it on their website. i always go a cheper way: i found it under Collage Videoas, google that one, also. it really is a good program. i just found out there;s a class near me, now i need to figure out how to do it on their scheduale. 6am isn't gonna happen here. but i think they have another one once a week.. lol3jays
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Do the LeBed exercises have some stuff just for truncal LE? I didn't find my LE therapist's stuff all that helpful for truncal. I wear compression garments and try my own version of MLD, but I've had a pretty good flare going on - making me pretty darn cranky right now, on top of stress (think that's adding to it) I would like to find - 1] measurement points for truncal 2]wrapping for truncal 3]specific MLD for truncal. No reconstruction, BMX, so flat, except axillary swelling and back swelling and some along incision.
And my php's lab tech won't do blood draws from the foot - too many chances for blood clots or infection, she says. So I get back of hand which hurts like hell and may be just as dangerous as inside elbow for LE.
Tingling/numbness in pinky is probably ulna nerve pinched at any one of a number of places. If it's accompanied by swelling, sense of heaviness, redness, then suspect LE. But check for both. If numbness in other fingers and NOT pinky - median nerve pinch, probably carpal tunnel.
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Thanks for the help with the video info. I'll check out the website and google college videoas. Today was an OK day with the LE. Been able to keep it under wraps.....
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I had a pretty good day too. My sleeve/gauntlet didn't bother me all day at work and when I took it off at home my arm looked pretty darn good! Nice to have good days!
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Yay for good days! Thank you all for your words of wisdom.
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Had a very informative meeting Monday night at the local bc support group meeting. The LE therapists were there and had a hand-out that talked about LE and how it is treated. They said if your doctor doesn't know where to send you for treatment, give them the brochure and have the dr office call them for the referral.
I told them about stepup-speakout. when the question came up about bp on bilat, I told them that I was taking my auto-bp machine, hand-outs on taking bp on the leg, and instructing the nurses on how to take bp on the leg. They laughed and said good for you. If it wasn't for Binney, Kira, and others on this site who have taught us to speak up for ourselves, I wouldn't have the nerve to do that.
Sheila
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