GRRRRRRRRR I HATE LE..........
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It's good to know that surgery is possible after LE diagnosis. Maybe I will get the dog-ear removed.0 -
purple, thinking of you and DH. (((Hugs)))
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I don't know whether to be happy or not. I finally found my old sleeve. I have worn it all afternoon. Here's hoping to getting it back down. Leg...I think is no hope in me getting it down. Three more weeks of summer vacation and I will get a referral back to the clinic to have it wrapped. In one spot there is a six inch difference now. Not Happy about that but what cha going to do? I can't help we live in the deep hot south.
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kitty, not fair on all the heat! glad you found your sleeve and have some small relief
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Does anyone know if Lebed has any trunk exercises? I think my fluid has moved into my trunk area. Did a lot today and had the leg wrapped early on. It's been so hot here that I've been taking off the wraps in the afternoon. Now I've noticed that my leg is swelling more as is my trunk. Need something to move the fluid up and out but don't know where to start. I like Lebed's other exercises but can't seem to find anything on the internet for the trunk. Sue
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Okay, I think I used the wrong term. I did the Lebed opening exercises and it obviously opens up the trunk. My fluid seems to be collecting more in the abdominal area down to the groin. Those are the areas I need to move fluid. Any ideas? Sue
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I think deep breathing is supposed to help. Also what about those leg lifts that she does towards the end of the opening exercises? Maybe a place to start? I would check with your LE therapist, for sure.0 -
Milehigh, I too have lower trunk swelling if I'm not careful. I do both the Lebed opening and the leg section (it's only and extra 5 or 6 minutes), and that seems to help. Jogging around the house helps too, or if you have a mini-tramp (rebounder) you might try using that (keep toes on mat and just bounce with your heels, only a few minutes at a time--safer to use the kind of tramp that has a safety rail to hold onto). I had a rebounder for a while, but it takes up too much room, so I jog instead.
Did your therapist teach you MLD techniques for clearing the abdomen? If not, ask her to show you and then have her check your doing it yourself.
I use a WearEase Slimmer which helps compress the lower trunk as well, but some people use bicycle shorts to control that swelling. I haven't resorted to that yet, but I suspect it would be very effective. Maybe I'll try it next winter, but for now I'm hot enough!
Let us know what you discover! Gentle hugs,
Binney0 -
Thanks Glennie and Binney for your input.
I did see the leg lifts when I did all the openings last night. My lymphedema is coupled with neuropathy so my left leg is numb from the knee down to the toes. Thus I have a hard time walking, much less jogging as much as I'd like to. I do have a rebounder though and will have to give it a try. The WearEase looks HOT! I think I'll wait a few months to look into those, lol. I do have some bike shorts (from Tommie Copper) so I may give those a try.
Thanks again for your help! Sue
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Maybe Spanx? My LE therapist suggested a top for me. When I went to Target to look for one,, I saw a lot of bottoms.
Do you have one of those big exercise balls? I don't have a rebounder, but i have a ball and I sit and bounce on it. Not sure if it is as good as a rebounder,, but its a nice way to sit and watch TV,,,, and maybe it's doing something.
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To All,
I don't get on here often enough. I LOVE this thread. I have laughed at every single post soooo far, especially the one about the fire of 1,000 suns or whatever. ...and yeah, the constant, "what happened to your arm," biking accident? (people ride bicycles a lot in Phx metro). BUT, then of course, the people who are supposed to notice DON'T. Got a blood draw the other day -- back in chemo again and have blood draws for labs to clear me for it -- and the phlebotemist says "arm preference?". I am kinda GLAD when they don't notice my arm though I gotta say.
Considering I was crying yesterday in the bath tub about LE. I have pitting now which I hate, but the bright spot is that the night-time wrapping which I NOW do as of about 3 mos. now or so, is working! I am pretty darn good at it now and hardly ever do a bad wrap anymore where I gotta wake up in the middle of the night and re-wrap. I also put myself back into "active treatment" by keeping my night-time wrap on continuously. I can put up with the extra heat and stuff and leave it on in the morning if it's going to shrink my arm.
After reading here, I have the selfish emotion of gratefulness that I have few symptoms of pain, thank God and I live in a dry, desert climate (also Thank God). After reading here, I always get jacked up about compliance. I don't do my MLD like I should and I sit a lot, but I'm 60 and retired on disability, so my challenge is to get up and MOVE!
Anyway, I am rambling. Think I will start a thread and share some experiences that I think will be helpful. Thanks for the rants everyone and I RELATE to the sadness and the madness. I am also doing a frequency therapy and that is the only thing I can attribute to why my LE isn't WAY WORSE than it is. Here's the link and feel free to send it on if you guys like it. Takes a bit to understand but here it is:
GwynnerWinner
Triple Negative Thriver since Dec. 2011
TAC first, double mass with removal of 8.5cm tumor!, complete axilla dissection (left - cancer side), heavy rads chest and axilla due to dirty margins
Treating mets now, but doing well on Abraxane!!!
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Togetherness,
Go on U-tube to find out how to wrap/bandaging. There are some great u-tubes on it and a bunch of stuff on there--like Kinesio taping etc. You can go over it again and again. Let me link it here instead of making you go to all that bother. Here are a few. One where a therapist wraps a "patient" and another one where you wrap yourself with tricks for self-wrapping.
http://www.youtube.com/watch?v=uSBwkGWUcHA
http://www.youtube.com/watch?v=OWq1kP4fvtY
#2 is the link for self-wrap.
Best wishes everyone!
GwynnerWinner
Triple Negative Thriver since Dec. 2011
TAC first, double mass with removal of 8.5cm tumor!, complete axilla dissection
(left - cancer side), heavy rads chest and axilla due to dirty marginsTreating mets now, but doing well on Abraxane!!!
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makemine -Thank you! Those are great tutorials. I received my sleeve and glove. They really make my hand feel so much better. Still going to pt twice a week..... Ugh. It does help but I am so tired of running to dr.s, pt appts and etc. Hopefully things will get back to my new norm soon. I have my TE/implant surgery scheduled for oct 6th. Just another chapter in this journey. Thanks for everyone's support.
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Grrrr....I got seven bug bites over the weekend in my own backyard, five on my chest and two under my compression (!) . Antibiotic ointment will hopefully protect me.
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under the compression??? GRRRRRR!!! That really sucks.0 -
Jeannie - I know the feeling - the "circle the bites and watch".. Hurry up and wait with bated breath.. That was me last week - I managed to not get cellulitis this time. Praying you avoid that mess too! Isn't it the pits how the little buggers can sting you right through your compression?
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yes, GMA, I was shocked to see two bites on my wrist, under my sleeve and gauntlet! Crazy! I am definitely "circling the wagons and watching." Some still look a little angry. I'm glad you're ok.
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Yes, and the sun apparently comes through the sleeves too although I'm definitely sporting 'lymphedema sleeve tan' which is almost the opposite of the farmer's tan.
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lol I know that one too Marple.
I have a question... my left arm starts to ache in the forearm after wearing my sleeve for about 4 hours. I think the sleeves might be too loose at the wrist. They are juzos (over the counter not custom) and I have only used juzos the last 3 years.. Should I try something different? Any suggestions?
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Questions ladies..I've been having a lot of shortness of breath. The last two x-rays showed it was the lymph fluid and not the need for a thorocentesis. I'm going back for another x-ray this week because I can barely breath, even with oxygen. My question is, if I end up needing another thoroc. they'll have to poke through my back. My LE moved into my trunk and abdomen a few weeks ago. Should I be worried this procedure would make it worse? Help! Sue
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Milehigh - Sweety - sometimes you just need to do what helps you breathe... I have had 2 more surgeries on my LE breast and found if I keep hydrated and had my LE therapist do some extra decongestive therapy just before my surgery, I faired quite well afterward. I still ended up with a bit more swell, but after I healed, I went back the the LE T and got me down in the "ok" range rather quickly.
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Milehigh, I'm sorry for your troubles. GMAFoley gives good advice. Saying a prayer for you!
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Thank you all. I'm having a terrible time getting the fluid out of my trunk and abdomen. Lots of breathing issues as a result.
GRRRRRRRRR is right!
Sue
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Well Gma, I took your advice and got in to the doctor today because I just couldn't breathe. I did end up having a thorocentesis so I'm pretty bummed that the lung is filling up. The other lung that I had surgery on has not refilled. So, that means that I'm looking at another surgery on the lung. Hasn't ever done anything until now.
Anyone else had two pleuradesis?In the meantime I'm still trying to get the fluid out of my trunk and abdomen! Any ideas? Sue
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Have you heard about Lebed:
https://www.youtube.com/watch?v=h2luK4JRAbo. I have to take it very slow or I swell but if you wear your compression and start out with the first 5 minutes and work up, I find it helps.. It is supposed to help pump fluid out of the lymph.0 -
Hi ladies - I only have used juzo over the counter sleeves, but now, my upper arms are too large for the one that fits the wrist.. It looks like I might have to go custom.. Is there any custom sleeve that works better than another? I don't know where to start.
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I second Foley's question? My LE just started about a week ago. I go in for eval the 18th, but there can be no doubt about it. It hurts. I never knew it hurts, but when it blows up, it seriously hurts. Well, you all know about that, having lived with it so long. You have my deepest sympathies, from the core. There's nothing like walking in another person's shoes. No offense intended, but I'd like to try, oh, maybe Oprah's shoes. Someone rich and healthy. LOL
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I am just sick of this (I'm sure that will make it better, right? lol). I am puffy and achy--and whiny, too, apparently! I have got to get a better handle on this; I do ok in terms of consistency for a while, then not so well, which is now.
I have nothing useful to add--I am just commiserating!
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I understand - The summers are the worst for me.. Especially when my new LE therapist is contemplating wrapping my arms - I haven't ever had to wrap - I'm not sure I have the energy to do it bilaterally... Hoping I can evade that.
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Gma,. thanks again for the input. I do Lebed fairly regularly. She doesn't have much for the abdomen. I'm getting fluid pooling below the belly button and over the bladder area and just can't move it with her or my MLD exercises.
I've not heard of Juzo but then I haven't looked. I had a custom sleeve done a while back but hardly ever wear it. I don't wrap my arm Gma but I do wrap my leg whicdh is where I have a lot of swelling. A friend of mine has a gal she works with that swears by the Elverex sleeve. She uses it because the band is 3/4 and doesn't cut into her arm. The lady I saw to fit me had nevcer heard of it. Different parts of the country I guess.
Yup this stinks! Sue
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