GRRRRRRRRR I HATE LE..........
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Relative:-
"When are you going to have children?"
Me:-
"Thats for me to know and you to wonder about"Bwaaaaahaaaaahaaaa!!! Great line Musical!
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I totally agree with you... It was hard enough dealing with the double mastectomy but now every time I look in the mirror I just see this fat ballon looking arm... I wasn't prepared for this ...it aches a lot.....ugh
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Feelnpretty. Welcome. Gentle warm hugs. Im sorry your arm is aching. There are heaps of helpful threads here that will help you to learn and cope with all that is LE. Many many ladies have said how this forum has been so much more helpful than what our Med teams have had to offer. Some of us were not told a thing and some of us were, but all to varying degrees and of course, we are all so different as well.
Please feel free at any time to ask questions if theres anything you want to know. Theres lots of knowledgeable folks on here.0 -
Tonight starts Rosh Hashana - the Jewish New Year. I want to take this opportunity to wish everyone a year of health and blessings.
Leah
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Feelnpretty - I second what Musical said. There's a lot of good information here, and I was guided towards some excellent hand swelling solutions, that my LE nurses were unable to offer.
I finally found a competant nurse at my hospital and was going through all the arm/hand nonsense and she said it takes a while to work things out. Like 'opening a combination lock' of excercices and garments that will work for me specifically. Frankly I'd prefer a magic solution - but that's not going to happen. Sigh.
And I have a general question. Is computer work bad for LE? My swelling is mostly in my hand, and after three straight hours on my computer yesterday, it was back to looking like a Muppet hand. I also rode my bike a little, and walked the dog (Using mostly the other hand), so I'm not sure which magic combination caused the swelling. Oh yes - I also had a lot of movie popcorn the night before. Does that have an adverse affect? I drink a lot of water, but that movie popcorn is lethal. Every time I eat it I swear it will be the last time, but I have limited willpower. Oh dear - if I don't be more careful I won't even be able to pick up a piece of popcorn with my big fat Bert & Ernie fingers.
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Any suggestions to get rid of my "muffin tops" as my LET puts it? the swell above the sleeve and on top of the shoulder?
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GmaFoley: Sorry, but I don't have a solution to that. I hate it though and have stopped wearing sleeveless tops. I can't wait for the winter to arrive so I can wear long sleeves again.
My arm aches too and I HATE it! I think I could deal with the swelling if the pain would just go away. I'm sitting here at my desk googling pain management for LE and not finding any real information. It is just driving me crazy at how little assistance there seems to be out there! Yes, I'm venting this morning because I'm tired of being in pain.
I don't like to use the word hate but today that is all I'm feeling this morning about this crappy disease or whatever it is! The only bright side to the day is lunch... we are taking a coworker out to lunch to a Chinese all-you-can-eat buffet. I think the sleeve will have to come off for this!
Oh, I feel a little better now... lol
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Leah_S - Thank you!
Happy new year to you! Enjoy the celebration tonight and health, peace and blessings to you!0 -
Ladies, I have been catching up with all that was going on this weekend - I was at my mom's house and had limited internet time or access.
Hugs to all those having issue right now. LE just sucks. I have now been at this for 4 months and am nowhere close to being accepting or comfortable. I HATE bandages, HATE sleeves & gloves, HATE not being able to wear my ring and most of my clothes, HATE not being able to chop vegetables, wipe my butt, do artwork, do gardening and other household chores without difficulty and fumbling, thinking about every little thing I need to do with my right (dominant) hand before I do it. NOT ACCEPTING very graciously yet!!! (I AM working on it, trying a little more Buddhist approach, once in a while I find a couple minutes of peace with it).
For the newest newbies: I did bandaging & MLD with LET to start with, he basically wanted to get me into garments after 3 weeks with minimal improvement, so I went on 2 vacations with no suitable garments that fit correctly, so was winging it for about a month. Got a second LET referral approved, did INTENSIVE DCT for 3 weeks, got some improvement, but still no garments that work. I have tried Juzo (have sent back the custom sleeve twice so far, maybe 3rd time is a charm???), my fitter doesn't do any other brands except the Solaris Tribute which has also been sent back once and is going back again - it crunches my hand, causes pain, and my fingers swell. I wore a glove with it one night, still had the crunching bones pain, but fingers were fine. Have ordered & returned Jobst, Mediven, a ReadyWrap, and a couple others. Found one Jobst sleeve almost acceptable and it has been discontinued, so I am searching to find a couple that might be leftover (Nancy at Brightlife is helping me), and my LET suggested a new brand from Italy Solidea. I just got them yesterday - am trying the lower compression one today with glove, and so far seems to be OK, just a little puffy space at the wrist, but at least the hand is OK. And so far the material is the most comfortable soft but very hot.
I am using FlexiTouch at least once a day, try for 2, especially focusing on core. I paid out of pocket for the whole thing as I was told I would have to wait about 2 months or more to get it approved, IF it got approved (only 50% of them get approved by my insurance company), the company was very helpful, I had a trainer for a couple of hours to help adjust all the velcro tabs and show me how to use the machine. It has been one of the more helpful things in the past few months. I also do MLD, DH helps every night. It is actually one of the things I can look forward to - human physical touch that does not cause pain. As with many BC "survivors" we have had to deal with intimacy issues, and this MLD has provided an opportunity for loving touch and being physically close to each other.
I have investigated acupuncture for LE, and it is OK to do acupuncture, does not increase risk of LE, and can be helpful for pain management, but does NOT improve the swelling itself. I have a very competent and honest acupuncturist and would do this if I was having lots of pain. As it is, I have moderate to minimal pain, and don't like the needles!
I got the Lebed video, it is great! But, no, I am not doing it like I should be, and I can't remember who asked me about it, so I will take that as a kick in the rear and get it back on my schedule! I also got a QiGong video, which is also good for LE.
My new LET suggested I might try cold laser therapy - found a chiropracter who has the low level laser machine - you can rent them for about $400 for a month, or buy it for about $4500. Considered experimental, but a nurse who has been doing research in this area has been working with my LET on another project and told her it really DOES work. There is a new clinical trial being started, but the only way I can get into it is to be in the "standard care" group. I think if you google Sheila Ridner and lymphedema or low level laser therapy you will find something on it.
Sorry to go on for so long - that's what happens when I take a few days off - I get even more verbose than usual, and can't remember if I have written this all before, so sorry if I am boring or repeating - just chalk it up to missing brain cells! And did I mention, I HATE LE!!!!!!!!!0 -
Linda, thanks for all that information. I am intrigued by acupunture and want to find out more about it. If it really is OK to do with LE, I might give it a try.
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Lainey, using the Search option (upper left) under Keywords type accupunture and under Category/Forum click on Lymphedema. There has been a bit of discussion on the boards.
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Linda, most people have found the low level laser results disappointing. Sheila Ridner has had that study open for years. The treatments are given by Ellen Poage in Florida.
I did my Klose training with a great LE therapist whose clinic had one early on, and she said it's on the shelf, because she finds it useless.
There are no good articles to support it. None. At the NLN conference I attended, Andrea Cheville eviscerated the lack of science behind the cold laser.
Some people feel it helps with fibrosis.
If you do try it, be careful, and don't pay very much.
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Leah, thank you! Health, blessings, and peace to you in the year ahead!
(Hugs and chocolate too, of course...)
Binney0 -
Hi Leah! Nice to see you drop by. Have a great day and indeed a great year.
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I just want you to know that I now read here every day...I may not comment, but I am here and I thank you.
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Thanks Leah. Happy New Year to you.
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TN, consider yourself a member-in-full
! (Hmmm, dubious honor when the group involved is the Swell Sisterhood
). We're really glad to have you along. We sometimes share cyber-brownies, usually double-chocolate with fudge frosting but any kind will do--here, help yourself!
Hugs,
Binney0 -
Wrapped tonight. Have been playing with the compression for a couple of weeks but arm is swollen for last two days and mld was not helping. So glad I have learned to wrap myself. This crap is expensive. Waiting for my new custom glove and first custom sleeve. Hope they fit right!
Maggie0 -
How long do I let the muffin tops go before calling the Primary to get back to the LE Therapist??? Will need a new script
Been doing the MLD, water, no salt and elevation bit since the first flight out to my meetings.. So its been about 10 days or so..0 -
Gma, if your sleeve is too tight it's time to address the problem. You need new sleeves.
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The weird thing is - I don't feel like they are too tight - I think maybe the compression vest I wear is pushing fluid to the shouldertops??? I will see what happens if I don't wear them for a while I guess.
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I do not wear a vest so I'm sorry, I simply don't know. But if you figure the vest is pushing fluid to your shoulder tops I don't think I'd recommend going sleeveless as the fluid could then simply travel down your arm. Can you adjust the vest so maybe it's not as tight?
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Or try a short-sleeved sports shirt that covers the whole shoulder/axilla, and wear that with your sleeve?
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I have amazing seats to see the St. Louis Carrdinals play Tuesday night. I love baseball. It's supposed to be 97 that day. I've already texted my dad and brother to see if they want the tickets. I'm so disappointed. It's going to be so crazy hot, sure it will be hotter than 97 with the humidity...:( Know you all understand. Hating LE today even more than usual. Nothing like a night away and a live baseball game....
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I'm really sorry D-H. How disappointing. LE sucks!
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Dawn-Hope - Damn! That sucks. And I know how you're feeling. For the first time in my life I'm looking forward to fall. Summer was great, but it was spent on land and in the shade. No sunshine or swimming for me.
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Dawne-Hope, that really sucks. Having to give up a live baseball game. That's the face of this shitty condition though. Hoping the whole country has glorious, crisp, colorful fall weather. Bring on autum!!!
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We're supposed to have two wickedly humid days here too. Then back to normal fall temps. I love fall!
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Thanks, ladies. xo
Tough day. It helps to know you all get it. I can't wait for fall either. It's my favorite time of the year. The heat is supposed to break on Thursday.0 -
((((Dawne-Hope)))) It's raining here now and the heat/humidity is to roll in behind this front. Blech!!!!
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