GRRRRRRRRR I HATE LE..........
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bookart, I would suggest taking and using some natural bug repellant with you. Now, having said that, can anyone recommend a good product? Tis the season!
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My wife has fought this off and on since she had Hodgkin's when she was 18 in 1972. She was dx with stage 2 BC in 2009 on the side with the LE. She had a lumpectomy, and radiation. Didn't have to have any nodes removed this time; only the sentinel check, but either that, or the sugery, or the radiation much worsened the LE.
I think that which is most frustrating for her is everything that is so highly touted to help, doesn't. Extensive therapy, wrappings, - I even talked the insurance into paying for a multi stage pump that mainly just causes her more pain. Her arm swells right back up as soon as she takes off the tourturous wrappings. She tries not to complain, but I know how much it has to bother her - physically and emotionally. As someone said above, I just pray for node replacement sometime in the near future.0 -
KMMD--interesting take on the Mei Fu article--I watched her present at the NLN, and many of the researchers have a "stake" in LE--either have it themselves or a close family member. Mei Fu was a student of Jane Armer (who has LE). Her presentation was all about "letting go and giving up" due to LE--as a positive coping mechanism, and I watched a presenter, who has leg LE speak to her afterwards about her discomfort with that approach.
Mei Fu has worked with us on the SUSO site, but I do find that as a woman who has no personal connection to LE, other than her patients, she often doesn't "get it". Unlike Jane Armer who gets it in a profound and personal way--and starts her presentations with the fact she was told "not to worry" and got LE after ALND.
So now ASCO has reversed themselves and says our weight gain, often due to adjuvant therapy, is not a risk????
ARGHHH
Bookart--do you have a LE therapist? I think you need to get the hand swelling evaluated, and based on that, I'd recommend you are fitted for a sleeve/and GLOVE, and wear some truncal compression. Unfortunately, truncal LE can start to involve the arm and hand.
JLen---Please send your wife to this thread, or let us know what we can do to help her. LE stinks, and we're here to share our hard earned knowledge
Kira
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Bookart, definitely get your LE therapist involved with the hand swelling. The earlier you treat that sort of thing the easier it is to manage on-going. Wow! "Thanks, Dad" is right! Have a glorious trip!
JLen, welcome! Greet your wife for us and let her know we're all here for her (and for you too -- thanks for taking a hand in this computer business for her
). Many of us have had experiences similar to hers, and very often switching therapists makes a world of difference. Even just a second opinion from another therapist can help. Here's how to find a well-qualified one near you (but with the warning that even well-trained ones can wander off track -- they're too often inadequately supervised):
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmJLen, when you say "torturous," I'm wondering if you mean the wrapping is painful to her, or if you just mean it's hard to put on and clumsy and embarrassing to wear (all of which it sure is!
) NOTHING about lymphedema treatment should be painful, because that draws more fluid to the area and makes things worse. If she's in pain, y'all need to get to the bottom of that and solve it before anything else is going to work. Just a thought.Be well!
Binney0 -
Hi - Does anyone have any good handouts or weblinks of lymph drainage massage? I have gone to my PT and her handouts are terrible - she went through the massage quickly, but I am having a hard time remembering them all. Thanks so much ! Sue
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DesignerMom, my LE therapist used the gardening gloves. She was so sensible, her theory is whatever is cheap & works use it. When I first got my new set of sleeves they seemed a little tight so I wore them inside out for a week or so to kind of stretch them out. I'm sure this isn't recommended but it seemed help break them in. It doesn't stay up quit as well. After that my arm feels better with it on.
Catlover6, I don't understand therapist that expect to show you one time & expect you to remember everything. My LE therapist started with the first few steps & then added more with each visit. It took about 2 months to teach me the entire procedure. She would be sure to check and make sure I was using the right amount of pressure & not doing it too fast. You have to develop a feel for how to do it. I should try to copy the ones she gave me.
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Designer mom if you are desparate...I take the sort of plastic bag that holds a number of tp rolls or paper towel rolls....
I punch a hole in it, put my hand through, and slip the sleeve over it...it's not as good as the fancy sleeve, but when I had to get a sleeve over kineseo tape it kind of worked
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cookie- Great tip. I'll keep that in mind if I get "stuck".
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Catlover, there's a good book about LE management called "Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing" by Burke and White that has a wealth of such information in it, and it's nice to have handy wherever you're doing your MLD, so you don't have to keep checking the computer.
On the other hand, as NJ points out, it doesn't sound like your current therapist is taking your self-care needs seriously, and you definitely need the skills to manage this yourself that only hands-on teaching can give you. If you need a "second opinion," here's how to find a well-trained therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmKeep us posted!
Binney0 -
So I just got my new sleeve and glove yesterday, custom. My appointment was at 3:00 and by 4:30 my fingers were white on the front, red on the back and tingly. By 6:20 I couldn't feel my fingers anymore and had to take them off (the sleeve & glove; not my fingers! Thank goodness I proof read this!). The sleeve is also causing a tourniquet effect at the wrist which is causing my hand to swell even more (same old problem as before).
Right now I'm just so frustrated. I phoned the place I got them from and they suggested that I might have been puffier when I put them on because it was in the afternoon...then why did you have me come in the afternoon? They also asked when I had my last "professional" massage (last week). They are suggesting I continue trying it and put it on first thing in the a.m. after I do my self massage and see how I get on. I'm to call them tomorrow to let them know if it makes a difference.
Does this sound right? The unfortunate thing is that I'm going away on Monday for two weeks so have to reschedule my next MLD appointment and so will have to wait til mid June. Again, the idea is to try the new sleeve and glove right after the appointment when I'm at my smallest. Anyway, I guess I'll have to try it and call them tomorrow and take care of it when I get back.
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Barbara, it doesn't sound right to me. I know when I've had custom gloves--and I do have them currently--the first Juzo glove required 5 re-makes. When I wore it, my thumb went numb.
Numb is one thing, sometimes we have to work into wearing garments, but trapping fluid in the hand is just not okay.
You should not have to get a professional MLD for the garments to fit. They should fit. period.
Just my opinion.
Kira
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Thanks Kira, that's what I thought. I've always had an issue with fluid being trapped in my hand. It's very frustrating because my hand is where my lymphedema first presented itself. My massage therapist suggested just wearing the glove as the tourniquet effect is causing problems but I'm afraid to do this in case it makes my arm worse.
I thought the new sleeve and glove would correct this problem but this doesn't seem to be the case. I think when I phoned they were saying that my measurements may have changed since they were ordered. Ya think? It's been a month! What they're saying is that, since I was measured in the a.m. when my arm was probably smaller, they would fit after MLD since I would be at my optimum measurements. Arghhh.
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BMac - Sounds so frustrating! It is really hard to see things getting worse and having the garments contribute to that!! I hope you get it sorted out soon.0
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Designer Mom: When I was an LE beginner, I bought the special gloves but now I use the regular Playtex gloves you find in the grocery store. The purple ones seem to have more substance to them (I have fake nails). I still manage to pop myself in the face occasionally, but that just adds to the fun and laughter of LE. The other thing is, since my LE is on my right arm, hand, breast, I have a good supply of left gloves. We should start a trading post!
I did a teeny tiny itty bit of gardening on Saturday. Just wanted to plant some impatients in amongst my hostas bed to add color. Powdered my hand, had my LE glove on, topped by a pair of my husband's leather gardening gloves. I used my good arm to do most all the digging, drank tons of water, took breaks...all the crap we're supposed to do. Sunday my hand was swollen mightily and the web a brilliant red and oh so sore. Insert favorite curse word here. Bless my DH who said from here on in, he'll do all the digging and I can do the designer planting. But heck (a word not of my choosing), the smell of the dirt and playing with the worms is one of my favorite things. Went for a treatment yesterday and I'm almost back to normal. GRRRRRRR!!!!!!
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Thanks Omaz, it is frustrating. I wish I wasn't going away as I have a massage booked next week as well as an appointment at the Lymph Clinic. Oh well, I guess it will all be here when I get back and maybe a break is just what I need.
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Barbara, the glove and sleeve should fit you all day. IMO
I know, my swelling is primarily in my hand, and sleeves tend to push it forward. I wear sleeves for heavy work, but it doesn't do my hand any favors.
Kane--that sucks! Glad it's better.
Kira
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Barbara, that sounds a bit odd to me too.
If you do decide to try it again in the morning, on the theory that your swelling will be less, at least don't wear it past the white-on-the-front-red-on-the-back stage. An hour or so should tell the story.If you wait until after your trip to return them for a remake they'll tell you that you waited to long, so if it were me I'd take them back this week. Smile and nod, if need be, but hold the line on them getting it right. A poor fit is utterly useless, and it shouldn't be you that takes the fall on it.
Kane, phooey! If you can't dig, what's the fun? (Worms are some of my favorite creatures, BTW -- humble, unassuming, uncomplaining, and by eating their way through the earth they renew it and make it possible for green stuff to grow. That makes them heroes in my book!
) Can you do it in spurts instead of all at once? I can get away with a lot of stuff by taking breaks every few minutes to do something completely other -- but I had to give up crocheting completely because I can't stand stopping and starting. Thank you for the loseit.com link -- what a neat program for weight loss! Makes me feel in control, and like I know what I'm doing. Lost a pound this week!
Be well!
Binney0 -
Just wanted to pop in and say thanks... I've been reading all the posts and learning so much from you all. The LE is about the same, doing the daily care. I wasn't taught to fold the sleeve in half when putting it on. That should help a lot! I'm always afraid my nails will go thru the fabric when I'm pulling it up.
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samsue - Is your arm hurting less now?0
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I have days when I over use it and it hurts. I've learned that I can't wear the "pretty" bras any more because it make the LE worse, so I wear a uni-bra... the sports kind... it's definitely not pretty. I do as Binney suggested and keep my arm elevated when I sleep (on a pillow when I'm laying on my side type of thing). It's warm here and I don't spend a lot of time outside because that seems to make it start hurting or if I'm outside I take rests when I'm working in the yard. Making small changes that are helping. I haven't had a major flair for about 2 wks. YEAH!
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Samsue, I'm glad things seem to be a bit better. Sigh. Babysteps, baby steps.
Barbara, when I got my custom sleeve, my LE PT said that if it was uncomfortable then the company should adjust it until it fit properly. She likened it to going to a tailor or a seamstress to have a suit or dress made - the adjustments are made until it fits YOU.
Leah
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Hi Ladies, yesterday I had a Dr.'s appt with a non BC related problem. When they did my blood pressure, she took it on my ankle and for me it was very high. 189/111- I normally run around 90/50 -100/60. Could it have been the location? The nurse seemed concerned and said she would let the Dr know prior to my procedure but she forgot. She did recommend that I see my PCM- any suggestions?
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Christine, not only can it be higher due to the location (but not THAT much higher!), but if they don't know how to take it there (which they mostly don't) it can really be high. You need to be lying flat for five minutes or so beforehand, and they need to know what they're doing.
Sometimes for me it's easiest to get it checked at the fire department by the paramedics there because they more often have to do BP in whatever location they can. (Besides, they're a lot cuter than your doc's nurse!
)Just a thought,
Binney0 -
(singing) I just got a lymphedema pump...do da, do da, I just got a lymphedema pump, and boy oh boy its great! 10 chamber. 6k. Cadillac! sweet sweet sweet... I guess my insurance compnay got tired of paying for my to be in the hospital! (with teh cellulitis---I have had 5 hospitalizations in less thn a year. PS teh guy taht delivered it said that his compnay has a 99% rate of gettiing approcal, so if you want his companies name, just ask! Hugs from hippy happy Terri in MI
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@Christine5...I gave up having the BP form my leg. It was inaccuarte and painful. So my less affected side, and do not do the automatic machine, I have them check the old fashioned way with teh pumping bulb. I do not get lymphedema on my other side, only the one side that had teh lympg nodes removed. So even though I had a double mascetomy I do teh arm BP (alothough I swrore I never would at first)...hugs Terri in MI
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Thank you Binney, she really didn't know what she was doing then. I'm sure that was the problem. I will keep the paramedics in mind, you are so right about them being cute. Honestly, per capita I think firemen are cuter than any other profession.
Terri, Congratulations on your pump, I hope it will really help you at keeping cellulitis at bay! Unfortunately I had lymph nodes removed on both sides but I haven't had any problems on one side with lymphadema. I have had a few blood draws as well as bp done a few times on the left but didn't realize I was at risk with that arm as well, until I came across this thread. My BS didn't really give me much information about it at all. So frustrating.
As a Doula, I often see physicians giving less than complete information to parents but I always thought that had to do with power or convenience for the physician, but for the life of me I don't understand how in the he'll they can withhold so much information about something like lymphadema. Can't figure out what the upside is for them. I guess that it's just about the time commitment it might take on their part. I guess the fact that they don't live with the discomfort or the incredible inconvenience it's easier to ignore. Any guesses?0 -
hi guys.. i def. think you need to go back to the fitter, asap..otherwise, they will try to tell you its too late,they tried to tell me the same crappolla, but, when my glove was fit correctly, on the 3rd try; its wonderful... this is a new experience for me. im typing "fully suited" truncal wrapped, gloves on, and the bi lateral sleeves from Lym. Sleeve Co. is whats' made it all possible. I took your advise, Binney, and went for less compression, and it made all the difference.. im one happy camper...3jays
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Binney4 - How do you get it checked at the firedepartment? You just walk in, flash 'em a smile and say, "Hey cutie, check my bloodpressure?" LOL!
The couple of times that I've been to the doc and they went for the arm and I said, "No" they were really angry! The fire department sounds like a good idea ... but how do you go about doing it that way?
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Binney, if by "doing it in spurts" you mean gardening for ten minutes, then stopping for the day, I didn't do THAT. I did go for five or ten minutes, stop and go inside (dragging whatnot in with me), drinking a glass of water and propping for about 20 to 30 minutes, then going back out. It's gonna be too hot this weekend to even consider my garden. Plus my web is just now feeling a bit better so I don't want to screw that up. And I ate too much this week at my pity party. Gained 2 pounds. GRRRRR. But nothing feels tight except my garments, of course.
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