GRRRRRRRRR I HATE LE..........
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I've never been as white as I am this summer because of the heat wave! I'm like Casper because I hibernate during the day and only come out at night. Gotta love the vampire life!
estepp - GRRRRRRRRRRRRRRRRR!
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I have my first mammo on bc breast on Monday. I just got my truncal LE under control about 3 weeks ago with kineseo tape and a camisole. If you are not supposed to have needles or bp on arm isn't squishing my breast the same thing? I dread it. I hope for the best! Becky
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Laura, a flare just sucks, sucks, sucks. Especially when you've been doing so great. Remember the movie "Jaws"--I always hear the drum beat and think "Just when you think it's safe to go back to the water" when it rears it's ugly head again.
GRRRRRRRRR is right!
Becky: people have debated about mammograms and LE, and they are uncomfortable. Lots of MLD and cmpression before and after and let them know to only compress to the point they need to get a good film.
Kira
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Kira--Thanks. I see my therapist right before so will have 45 min of MLD at 7:00 right before the mammo at 9:30. I will compress and MLD right after.
Laura (I guess you are Estepp)--Sorry about the flare. I am hating this humidity. If only the GRRRRs and swearing would decrease it!!! I hope things get better. Our humidity is so high I am thinking of going into a freezer locker at the butcher shop! Hang in there.
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Hi Ladies.............said before I just got my sleeve, and go Monday to have it put on.......I have a question but don't want to pose it as a "new thread", maybe some of you can help.
When I was measured for my sleeve a specialist who just measures for LE did it.............I have a heavy arm up top because of weight gain, weight loss, etc.etc.etc..........................ok.........when she did my measurement she wrapped my arm from the elbow up in "saran wrap".............yes that's right "saran wrap", and then measured it...........................like an ass I didn't say "why are you wrapping me in saran...........................so I'm turning to my smartest ladies to ask you.....................why did she wrap my arm in saran wrap, and have any of you had that done..................thanks for any answers.
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Becky, you've got it covered with that very timely MLD appointment. Stay well hydrated too, and some deep breathing. All adds up. Maybe some Lebed later in the day. Let us know how it goes. Hugs!
Dawne-Hope, at least a few minutes a day in the sun for the vitamin D, yes? And it helps us remember what the world outside looks like!
Ducky, I've never heard of using Saran wrap. I'd really like to know about that. Hope somebody here knows. Did she wrap it tightly or was it just a loose application? Did she use several sheets of it or wind it down your arm? I'm trying to picture this. LE is a bizarre other-reality to have fallen into, but then every once in a while you run across someone who makes it even more bizarre!
Be well!
Binney0 -
Binney........She actually began wrapping down around my elbow, and continued all the way up my arm to my shoulder.................she wrapped around a few times, and it was not "tight", but it was "snug" around the fatty part of the arm that hangs down my (as my grandchildren call them)......bat wings........................
My son drove me, and he was in the room when she brought out the "saran", and began wrapping................he said (always the clown).................Yo, Mom, I could have done that for you, I have a whole box of that stuff in my kitchen drawer"
Insurance is going to pay for all of this stuff, another sleeve has been ordered..................they are also giving me a night garment (which my LE specialist recommended), so I have to make another trip to the place to be measured for that......................The person who does the measuring said "the night garment fits differently, so you will have to come back to be measured for that".............when I go I will ask her "why the saran" , and then let you know................it is nearly 30 miles to this place, so I'm not happy about that, but if it means "no more bandages at night", then I am willing to do whatever it takes....................although wrapping has become 2nd nature to me now.
Have a great day Binney, hopefully one day we beat this LE..............at least we can hope........
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Ducky--My therapist wrapped my arm in Saran wrap also. She did measurements with and without. She told me why but right now I cannot remember why. If I think of her reason later I will let you know. It must have worked because my sleeve and jovipak fit well. I think it had to do something with compression and the loose skin. It was not tight--just snug. I think she said the jovipak people told her to do so. I see her on Monday and will ask again. I had forgotten all about it until you mentioned it. My therapist also gave me a prosthetic lotion that makes the sleeve slide on easier--especially on the upper arm. It comes from a company called ALPS. I also use "It Stays" under my silicon band to make sure it stays up. Sorry you have to wait until Monday. The freedom from daytime wrapping was great. Becky0
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Ducky--I meant to say I use "It Stays" BELOW my silicon band, not under it. B
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thanks Becky...............glad I 'm not the odd ball around here..............actually though I was being prepared to become someones lunch that day .............Sarah wrap........are you kidding me.................but I guess the "bat wings" need containing.
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so a bit of good news...though I am always scared I will jinx myself......I got measured today...everything below the arm was the same...above my biggest difference in my LE arm was 1.5 CM.....so yea!
Still having booby issues...but for now the arm seems to be doing well.
Have a great weekend!
Ducky that was so funny about you being someones lunch!
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JO-I am still too new to give a lot of answers also but our day will probably come. I think it was Binney who mentioned putting some cornstarch in a sock and dusting your elbow before putting on your sleeve. My therapist approved and it has helped me. I also put on lotion before the sleeve. I have been in a sleeve four weeks and my elbow seems to be toughening up or getting used to it. I have to make sure my sleeve is on just right. Becky
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Wow, cookiegal, that is fantastic news. What do you attribute the decrease to? KS
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KSI...I have been pretty good about doing everything...therapy, wearing a sleeve, swimming, trying to lose weight....but who knows?
My le is really in my upper arm and breast...my lower is quite small..it took quite a while to get the right custom garments. Again it may just be luck of the draw.....
(except wrapping...I really did not do well with wrapping)
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Yes JO, I was talking about inside the elbow. B
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cookiegal.. im about to go to fitter to get new gloves..what kind is it that you love? and, are they full gloves, with fingers? my fingertips are the worst (mickey mouse hands ) thats what my LE therapist calls them. when i dont wear full gloves, the tips swell... thanks.............3jays
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Tomorrow is the day .........I go to my therapist with my new sleeve, and she is suppose to show me how to put it on..........................It is custom made..............I hope the hell this thing works, and goes on easily...................when I wrap, I have this piece of "blubber" that appears at the top of my arm midway between my shoulder and my underarm..........................well yesterday I managed to get that ungodly piece of blubber into the wrap..............................was so proud of myself, even though it took 2 tries to do it.
Well by 11pm last night my fingers, and thumb were so swollen I had to take the friggin thing off............so instead of having the blubber at the top of my underarm..................it was now down at the bottom of my arm with fingers that looked like someone blew up a "hospital" latex glove and attached it to the end of my wrist...................I finally took the friggin bandages off......................there was company at my daughters, but I didn't care.............
Everyone, mostly family........................sat there watching me unwind the damn wraps, like they were watching a magician pull the "scarves" out of his jacket sleeve.
When I was done, I stood up, bowed, and said "hope you all enjoyed the show"......................it got a good laugh, and took some of the "oh what a shame" tension out of the room.
To think I was so proud of myself for getting that blubber into the wrap..............Oh well maybe the sleeve will be different.....
Happy sunday ladies.....................going to my sons for a filet mignon dinner.........we are celebrating his 54th birthday and my daughter-in-law is having dinner for him....................I did pretty good this weekend................Filet mignon at Texas Roadhouse on Friday night with my daughter......................Ravoli's last night with a daughter at her house,,,,,,,,,,,,,,,,and today filet mignon again with my son at his house.................someone say YUM, YUM..................
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Ducky, looking forward with you to tomorrow's adventure. Let us know!
Next time you get an audience like that, for goodness sake pass the hat!
It helps defray the cost of this stupid condition.Hugs,
Binney0 -
Binney...............your right, I'll have to remember that..................hahahahaha
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Oh Ducky--I LOVE your humor. Blubber?? Guess we will never starve as we carry our own nourishment! I wonder what caused your swelling when your were wrapped? Good luck tomorrow. Can't wait to hear what you have to say about it..Becky
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Becky.......God only knows..............Everyone else gets fat in their ass.........I had to get mine in my arms...................of course when I was 21, and 99 lbs. with a 22 inch waist, I didn't have all that fat on my arm.......................My grandchildren when they think I'm not paying attention will come up to me when I'm sitting and my "blubber" is hanging, (even before cancer and LE), and swing it back and forth..................They call them my "batwings"................
Becky you would not believe how small and thin the "real upper arm" is...............
Imagine I use to have a 22 inch waist.............now I have a 22 inch thigh....................and where there use to be an "ankle" there is a "cankle"..............................ankle and calf all in one................Cream donut anyone...................
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3jaysmom they are barton carey....they have full fingers....I have been told they really work better for milder hand LE....If you have major hand swelling they may not be the best, but I love them,they are so comfy and fit so well, they are cooler, and seem to resist stains and snags.
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I've not been on the boards much lately and I apologise for not reading up on this thread before I post. I did give myself a laugh today though. This morning I put my sleeve on inside out for the first time since I started wearing one. The top even has the silicone strip. So how I pulled it up and didn't notice that will remain a mystery to me. It was when I adjusted it later I realized what I had done. LE made me laugh.......go figure.
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Sharon!!!!!
You've been missed. Hope all is well, and funny how even after being LE "experts" we can mess up the details.
Hugs
Kira
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Sharon..........Hey blame it on Radiation brain..........that is what I do now for all my screw ups, and everyone seems to buy it......................hahahahha
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Hey there, usually just lurk but post occasionally. I left a message for my fitter yesterday; hopefully I'll hear back tomorrow. The sleeve is doing what every other sleeve does...making my hand worse. When I was at the lymphedema clinic two weeks ago they suggested maybe trying a one piece to avoid the tourniquet at the wrist. Then on Thursday my massage therapist said the same thing so I'll see if I can do that rather than another sleeve. It's all so frustrating.
I was out at some Open Houses today and at one house the agent asked what I'd done to myself. I thought he was talking about the bandage on my big toe (from my recent ingrown toenail surgery) but soon realized he meant my arm and hand. You know, I'd actually forgotten I had the sleeve and glove on until he reminded me. So for the umpteenth time I explained what it was and what caused it and then he went on and on about my being a survivor (actually a two time survivor), yadda, yadda, yadda. I'm so sick of it. I've said it before but from now on I'm going to do it. I'm going to say it's a long story and leave it at that. The constant reminders and constant explanations really get me down.
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Hi 3jaysmom,
I've tried a lot of different brands of gloves. None are perfect, by any means. I've posted my impression of the CUSTOM made gloves on a different thread:
http://community.breastcancer.org/forum/64/topic/771699?page=1
I've tried several off-the-shelf gloves. Will try to post my opinions on them later this evening. KS1
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BMac, I don't give explanations. If a casual acquaintance asks I just tell them I have a "swelling problem" and the sleeve "helps control it". End of discussion. I don't tell them about the BC since I'm Stage IV and don't want to have to deal with the "puppy dog eyes" reaction. I only explain to people who already know about the BC.
I have a question. I've started a water aerobics class and don't wear any compression during the class - I don't have another sleeve to wear if it gets wet. Once I order another set (in about 6 weeks I think) would I be better off wearing compression for the aerobics or relying on the water pressure as I am now? The teacher has us do as much as possible of the arm stuff under water.
Thanks.
Leah
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Leah - I'm interested in this question too re sleeves and water. I don't know where I read it but it said to not wear compression when in the water. Don't trust this as reliable info but I've done some swimming and I haven't worn any and I do OK. I put compression on after I get out but the cool water and the pressure of the water works pretty good for me.
How are you doing not wearing any? Does the swelling get better? Or do you notice any difference at all. Hopefully you're not getting worse? I hope it does wonders for you.
[[hugs]]
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Soooo... ladies, I have not posted in a long long time. I have moderate (16 oz. more on right arm than left) arm and hand LE, as well as truncal on R side. Have wrapped some, but mostly rely on sleeve and gauntlet. I recently discovered a very comfy find for the truncal.... at COSTCO they sell a "shape wear" cami ( it's called "Fat Free.... something or other") Really supportive through tummy and ribcage.... no compression for breasts (I don't have any....but fits well when I wear the foobs, also ok without). Very reasonably priced, and mostly cotton, as opposed to sveaty spanx.
I too, rec. the Lebed tapes. Ironically, her brother is an ob/gyn, and delivered both of my boys!!!! Small world.
Wish you all could join me here on my island in the Pacific Northwest.... it is a cool and misty 58 degrees. I am never moving!!!!!
Gentle hugs to all
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