GRRRRRRRRR I HATE LE..........
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JO-5
That is sort of like my customs, except they have fingers. I can't wear gauntlets, have to have a glove, or my fingers swell up like sausages. 😔
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Good luck with the Velcro wrap, Joanne. I can't believe what an ordeal you've had!
I wanted to try one of the Velcro gadgets, but my therapist had been told that they didn't work well for extra large arms. After watching a video of the donning process, I don't know that I could readily reach to get the top portion closed properly. I went to my sleeve provider and asked that she add extra ease so that I can hopefully tolerate it for more than a couple of hours at a time.
Lyn
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Joanne- thank you for the info on contrast dye. I see my oncologist next Wednesday and I'm going to ask more questions for sure. As far as sleeves go I have always wore Juzo until a few weeks ago. I saw a sleeve with humming birds on it and wanted one. It was made by Lymphedivas. It took 2 months for insurance to approve and pay for it. I love it!! It's so soft and never slides down. I have ordered 4 more different ones. On the website under "Shop" they habe a section called discount seconds. When you order one you get a card telling you why it's a second. It's usually a dye lot shade issue or the seamless weave is line is off a stitch. (Which I just wear on the toward my body so no one sees) I'm glad you are doing so much better!! I'm swelling some and I think it's due to the weather changing. Plus we just closed our pool so I haven't been swimming in over 3 weeks!
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I just ordered the same size as my Juzo. I have 3 of the beige ones now. They are $32.50 ($37 with shipping if you order one at a time) my arm loves them...lol Hope you find one you tolerate well. Did you happen to read the history behind Lymphedivas?
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Jo, does your sleeve irritate your whole arm, or only certain spots (like the elbow, for instance)?
Anxious to hear how you do with the wrap!
Hugs,
Binney0 -
Ohmigosh, Joanne, that's the "good" therapist??? Let us know about the Velcro sleeve once you take it for a test drive. My sleeves are also Juzo. My custom sleeve is rougher than the butterfly-patterned over-the-counter sleeve I tend to go back to because it's not only smoother, but stretchier so easier to don.
VargaDoll, I'll have to keep Lymphedivas in mind when I switch to Medicare. Thanks for sharing your experience with them.
Lyn
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I received a new sleeve and glove yesterday. It's by Mediven, and it feels much better than the Juzo sleeve I had. A different person measured me, so that might have made a difference. I noticed the new sleeve did not leave a red mark on the inside of my elbow like my old sleeve did. I needed to put powder on my arm before putting the Juzo sleeve on to minimize the redness.
Jo - I also have a velcro wrap sleeve that I started using this summer after my arm measurements went up. It worked so well that my kinesiologist actually said "Impossible!" while entering my measurements in the computer! In French, it sounded much more dramatic. I wore it snugly at night, but on the weekends I could wear it wrapped more tightly for longer periods during the day. Hope it works just as well for you.
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I like the Mediven product. I also like the JOBST better than the Juzo.
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I've started wearing the Lymphedivas sleeves. They are much softer and cooler than my Juzo ones. Our summer was a scorcher, and I was very uncomfortable in the Juzo sleeve. I pretty much stayed inside all summer long. Also, I just do not like Juzo's "ACE bandage" look and feel.
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Jo, I sometimes use cornstarch patted on the areas that are irritated by a compression garment, but ask your therapist about that before you try it, as yeast infection is a distant possibility with cornstarch. And your scorecard on developing problems with "distant possibilities" is not good! It does work, though, to ease rubbing and irritations.
Hugs,
Binney0 -
Oh, right, Joanne...I misremembered your post details. I got both sleeves at the same place, a retail store that specializes in wigs, compression garments, mastectomy swimsuits, etc. In examining my two sleeves again, I realized that it's more that the patterned sleeve is thinner than the custom one rather than being made out of a totally different fabric.
Lyn
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Joanne, in an ideal world you should have to prove you're independently wealthy in order to "qualify" for lymphedema!
Here's some good news for those in the U.S.: the Lymphedema Treatment Act, which provides for insurance coverage for lymphedema garments, is very likely to be passed before the end of this year! You can help. Go to:
https://lymphedematreatmentact.org
and follow their easy-to-manage directions for influencing your members of Congress to pass this bill. It only takes a few minutes, and it can make a huge difference.
(Here's the steadying news: coverage will not be immediately available as soon as the bill passes. The wheels of bureaucracy move slowly. Hang in there, it's gonna be good!)
Hugs,
Binney0 -
Jo - I'm not sure but think it was Hugz that recommended using "Body Glide". It's a anti-chafing & blister protection balm. Hopefully someone else will chime in on this product in relation to LE.
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Just wanted to share that your entire order is 30% off at Wear Ease using the code SPOOKY plus free shipping in October. No, I don't have any financial connection - but I do wear their Sydney Compression Bras 24/7. They are easy to step into, have a nice V neck and are very comfortable. I've never had them ride up. Really nice people and returns are accepted if something doesn't fit.
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Hello ladies! I have been running around like a crazy woman! I just took a second to catch up on the thread while I nebulized my girl and wanted to add Wear Ease are wonderful! I had one of their bras and wore it for a few months (maybe 3-4) and it starred to unravel a little. I had hand washed and line dried so I was bummed about it. I went to the store were I purchased it and was promptly handed a new bra no questions. Now that I've lost weight I need to maybe get another new one. I'm not sure I can alter a bra.
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I'll add my endorsement of WearEase too, as I've been using their Slimmers for several years. Nicely made, soft fabric, doesn't ride up, handles the desert summer just fine, and a comfort to put on every morning. And like Vargadoll I've appreciated their customer service. Good folks. (And I don't have a financial connection either!)
Binney0 -
Thanks Binney! I am back
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I ordered a Sydney bra last night and it didn't give me the discount. Called this afternoon and the discount was credited to my account. Great business!
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Just skimmed thru posts quickly. It's body glide product I use in my over sensitive inner elbows but I also use very thin scar tape from rite aid store called ScarAway. I like that very much and switch around these two products just to make life a little more interesting.
I think scaraway makes a second skin feeling so maybe I like it better. With scaraway tape you need to find your sweet spot when putting it on so it doesn't fold and roll if you exercise a lot. One tape will last about ten days and it about 25 USA bucks for I think 8 or10 aprox strips.
CANTLIVE WITHOUT THESE TWO PRODUCTS. WOULD GIVE MY EYE TEETH IN EXCHANGE !!!
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Becky! Welcome back! Brava for remembering your password--always a challenge for me. Which is why I have a "4" after "Binney"--had to keep re-registering.
For those who don't know/remember Becky she is, among many other advocacy projects, a major force in advocating in Washington for the Lymphedema Treatment Act.Onward!
Binney0 -
Yes, the creases are normal, but not the burning skin. I’m not as careful as when I first started. Tightness is based on how long I plan to wear it.
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Becky. Yeah it's Becky! Please join us on exercise kick butt thread we need you. Your our Smokey mountain walker right? So nice to hear from you do give a quick run down on the past if you can. How's stupid le treating you anyway?? I'm hitting the pavement exercising le away these days, not getting railroaded either! Well my eating is railroaded ....battle!!!
Jo your inner elbow looks sore. If it gets worst put the scar tape on as a buffer from sleeve rub. Haven't tried cornstarch but wow it would be cheaper. Bodyglide is sold at runner store for 14 cnd. I just checked the price. I think they make it in Washington so itshould be cheaper for you USA folks.
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I got my Body Glide at Academy Sports, but they have it Target & probably at WalMart. The price is around $7.00
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Do you have a liner under the velcro wrap? In this picture, it's the white fabric.
I can’t wear my velcro wrap if I’m doing anything requiring bending my elbow. Then I use a regular compression sleeve.
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Joanne, I have the same wrap and use it as my nighttime garment. It does leave the identations in my skin. My therapist told me that they are not unusual. And yes, the wrap does limit bending my elbow/using my arm. Putting it on is the very last thing I do before getting into bed.
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Becky- I just found you on Nancy's Point!
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I lost 30lbs and my arm has gone down substantially! I never thought my extra weight might be a factor. It's still there, I just can wear clothes I couldn't before
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MinusTwo - I love my new Sydney bra! It came with nipple covers to! I'm wearing it today for the first time. I have on a sweater (it's cold in the mountains thus morning ) so I'm not wearing my swell spot wrap and it's so comfortable even without the wrap!
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Varga - great news. Of course we're all different but I'm always glad when someone else finds this bra comfortable & useful for breast & truncal LE.
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Your arm looks so much better! 🌻
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