GRRRRRRRRR I HATE LE..........
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Sleeves started irritating my upper arms. We are halfway through our drive. Have them elevated, but ripped the sleeves off . Can't wait to get my custom sleeve for the left arm. The right one can still wear OTC.
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Don't swell!!!
I hope the second half goes better.
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i just put them back on after letting them sit on an ac vent.
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i bet they are nice and cool now.0 -
just caught up reading here...everyone is in my prayers!
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Dunesleeper, thinking of you.
Since this is the grrrr...thread, can I say I am tired of all the prolonged stares and comments I get on my sleeves.
On the bright side, I saw my plastic surgeon today and he looked at a lump that just appeared on my chest over the weekend. He is sure it is just fat necrosis (tissue from my reconstruction that died). I did ask him to biopsy it to be sure. Life is a roller-coaster for so many.
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do you wear bilateral sleeves? I only wear on one arm,, so there are a lot of double-takes. At first I think people think it is a long sleeve shirt under my top,,but then they notice only one sleeve.This guy in the mall stopped me once. He sounds like a total "stoner". "Wow, like you wear that for compression? Like the athletes do?" Like, yeah, man.
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LMAO Glennie!!!
Well, so far I have not felt self-conscious about the wrap. Of course, people are thinking I injured myself; so, I think that is a different circumstance.. Then I get to tell them about the cancer coming back and boy are they sorry they asked. Well, I should not be that way. It is not that they are sorry they asked. It is that they are sorry for me that the dang C came back.
I can't wait to get my sleeve and gauntlet. I went ahead and ordered them. All my measurements fit in the medium range, so I went for it. This way I'll have them to wear to the concert I'm going to later this month. I'll order others with a prescription whenever she gets around to writing it. Meanwhile, I'll be sporting the lace-looking lymphadivas!
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stylin' with the sleeve!! I got tie-dyed ones. We should post pics !!0 -
I have bilateral LE. I have many Lymphediva sleeves in various patterns, some fierce, some sweet. I understand they look like tattoos, but I get tired of hearing it from every Tom, Dick and Harry, as if I've never heard it before. I bought the patterns to make ME happy. Once I walked into a shop and the shopkeeper said, "What happened to YOU?" I said, "Breast Cancer!" Couldn't help myself. Long sleeve season is approaching which is mostly good, just sometimes uncomfortable. I'm really not a crabby person. Just need to vent here periodically!
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((( Jeannie )))
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Vent away, Jeannie,, we understand!0 -
Wishing all good strategies to managing this LE garbola and also those battling dang cancer.
The other day the thought crossed my mind that I wouldn't have to worry about LE if I chopped my arm off but.....realized the LE fluid in trunk would probably creep over to the at risk side and then I would have no other hand to mld it ....ugh. can't win.
Thanks for letting me gripe.
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Oh, hugz. That is some deeeeep thinking there!
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Vent away!!!
I was so excited to learn this morning that a medical supply place where I live just became a Juzo retailer. I called and was able to be seen this afternoon to be measured--it has been such a source of frustration, and I have traveled and called all over the place, and just have not found anyone who has any experience with LE. So I get there, and the person who's seeing me comes over and looks really nervous, as in visibly so. She got out the manuals from Juzo and spent a lot of time looking at them, and then said, "I can't remember which book to get--are arms and hands upper extremities or lower?" All I could think was that that did not bode well. LOL. As we proceeded, I noticed that she'd written down a measurement that was off by about 2 cm, and asked if we could redo that one. When we did, she said she couldn't tell "if it says 20.5 or twenty and a half." As we looked at the gloves/measurements, she asked I'd thought about maybe trying the sleeve to see if I like it before I decide to get gloves. I had some questions about the seamed vs seamless, and she said she would ask the Juzo guy (which is fine with me), and that I was their first customer since they added LE sleeves. I know people have to learn, but I'd really rather not be the first in this case! I just don't feel very confident about this--I really need someone with experience, but it looks like I may have to travel 6-8 hours to find that. Grrrrr!
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Wow, Aunt Paula,, you really got a newbie. Bummer.0 -
Aunt Paula, sorry but I'm rolling on the floor here--let's see now, is an arm an upper extremity or a lower extremity?Did you tell her it depends on whether you're standing on your head or not?
Just this morning I accompanied a friend with LE to a fitter (not mine!) for garment measurements. She has swelling mostly in her wrist and hand. She tried on a Medi off-the-shelf, and the fingers were so long her little finger couldn't even be seen. So the fitter decides, hey, let's just use a gauntlet--they're more comfortable anyway! Took my breath away. I objected, as pleasantly as possible, so we managed to avoid that craziness. But at least this fitter knew an upper extremity from a turnip!
Somehow it just doesn't seem right that we should have to train our doctors, nurses and fitters too…y'know?
Aaaaugh!
Binney0 -
I admit I was laughing pretty hard after I left--might as well, right?!
She was very kind and clearly really wanted to be helpful, but you're exactly right--I am ready to find someone who says "Have a seat--I know JUST what you need!"
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wow! Unbelievable. I have such a wonderful LE therapist, wish I could share him with all of you. And to make it even better, he has a Boston accent....
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My first fitting 2 weeks ago didn't go that bad. I kinda shook my head at a few things a put him straight. I got the custom sleeve today. Forgot that I should wash it first and broke out in a rash trying to wear it. LOL. When will I learn.
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Thanks for the heads up on pre-washing, and Aunt Paula's story was hysterical, sad but hysterical!!!!
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Hitting the hay with my bio care night sleeve. Just feeling a bit tight in fingers because I went out tonight and had tons of salty food. I just could not bare all the attention the sleeve would bring and ditched it with the dreaded glove. Probably should have not. Sometimes you want to enjoy a evening with out LE stealing all the attention. Bet you all agree!
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I am new to this but I do agree. I just had to unwrap for a few hours last night.
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Here is something not to grrr about:
See thread I bumped up on donating used LE stuff to a third world country, Haiti. A type of LE is rampant there due to a certain mosquito bite and they can't afford garments, wraps etc.
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I'd love to donate these stupid bandages. Unfortunately, they are still needed here. So, that was me being grrrrr. On the not-grrrr side, that's an excellent idea.
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Hi -I have been reading a lot of posts, so I am hoping I am in right area. I am 3 years post surg -had 26 nodes removed and got LE right after radiation (spring 2012) --its not terrible, but noticeable (2 cm difference from other arm). Quite honestly I hate it. I have young kids to look after and a house to clean. I work full time. The most I can do for my LE is wear the space suit at night (the flexitouch), wrap and wear garments during the day. I thought I was on a roll, but as it only got hot and humid the last 2 weeks of summer, I started to swell again. The MLD usually works, and sometimes I see my wrist go down almost immediately. I have been stung by a bee and bit by my rabbit on my affected arm. My therapist thinks that's a good sign I didn't get an infection. However, Any sort of housework I do, and any hot weather seems to bring it on. I really had enough of the emotional roller coaster during bc treatment, I am so not in the mood for this. I see a lot of you exercise and although its not an excuse, I have no time to myself. I have no support with my kids, home, job. My arm is probably at a stage 2, so i know its irreversible. I dread getting fibrotic. I am dabbling in some alternative options such as essential oils and laser. My hospital is offering a clinical trial to treat LE w/acupuncture. What do you all think? What has worked best for all of you? I have many years ahead of me (my mouth to God's ears), and I just hate the thought of this getting progressively worse TIA!
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You know much more about LE than I do. I didn't know about staging or becoming fibrotic. Looking forward to reading the responses you get.
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You might want to start a new thread and ask about the acupuncture. I could have swore I read someone on here who has done it,, but I don't remember who or what thread. Maybe try a search for it too.No infection after getting stung and bitten,, is really great!! Rabbits have sharp teeth!
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Glennie. I memtioned the acupuncture, but for pain on the LE side. I haven't seen any reduction of swell but also haven't seen more swell after treatments.
As far as bug bites. Please google 'step up speak out' and look for their prevention page. It also has an emergency section. If a bite turns into cellulitis it can be trouble. A good thought is drawing a circle around the bite/sting and if it grows, go to emergency asap. Don't want to scare you, but someone gave me this talk. I was greatful because i ended up getting treated.
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I think I just found the right thread. I'm 3 years out of surgery and developed LE shortly after radiation. I was misdiagnosed for almost a year with tennis elbow-golfers elbow and carpel tunnel as there was very little swelling (but a lot of pain) After my second mastectomy my thumb in the original treated side doubled in size and I knew for sure this was LE. My GP, surgeon and Onc seem to be very uninformed and think because it's barely noticeable it's no problem. I can't get any of them to refer my to a therapist. With the help of the internet and youtube videos I have been able to get all the swelling and pain down, I fitted myself for my own sleeve and glove and now I know the early signs and keep it in check myself. Fast forward to recently. 10 weeks ago I started having pain in my chest in a specific spot. 4 weeks ago I noticed a lump in the very same spot and was immediately seen for an ultrasound and mammogram the same day. Nothing showed up (whew!!) since then the entire breast area has felt "full" and sore. Because I've been so panicked about the lump being cancer I've been massaging and rubbing the area a lot. Today there is some sudden relief in the whole area, all the pain is gone, the lump I had noticed has almost completely disappeared. Does anybody here think that this sounds like it was LE also? I'm thinking I may have accidently helped myself by continually rubbing my lump. Could the fluid have collected and caused the lumpiness and full feeling in my breast?
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