GRRRRRRRRR I HATE LE..........
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I like that word "grotty." Doesn't seem to matter what I do, my beige stuff, especially the glove, gets grotty. I worry more about what foul things may be lurking unseen on this stuff, since I've got two little kids and three animals. I have found a couple things that seem to help. I can't wash it all by itself because I've got this front-loader washing machine that supposedly senses how much laundry is inside and adjusts the water. If it's only the sleeve, it doesn't seem to get that there's something in there to be washed. So I do a mini load of dark laundry every night. Don't know if that's an issue for anyone else. I use Charlie's Soap, which we started using when we used cloth diapers and my daughter reacted to everything else. It's very mild, but seems to work pretty well. Does't have things like brighteners in it.
My custom-fitted Juzo sleeves are also drastically different in length. More than a centimeter when lying one on top of the other. They're both the same diameter, and somehow they both seem to work. I've gone through some sleeves before these two that just didn't work due to fit. Is Juzo especially unreliable? I wish I could wear something off-the-shelf so I could get something from Lymphedivas, but there's no way.
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I wish that my health insurance would pay for my lymphediva sleeve and gauntlet. But as I am in Australia they will only pay to an Australian Business. The result I need to pay in full.
That sucks as the sleeve offered by the companies here are not pretty at all!
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I started with a custom sleeve on July 6th..............was measured and waiting with great anticipation ;for the sleeve to be delivered..................ok now the horror...............the stinkin thing was too long, according to my LE therapist......................ok, now this went back to the fitter, along with me, and an hour ride up the worst traffic highway in our state...........I95..........was remeasured, and also was told I needed a glove...........was measured for both.............the new sleeve came in about 1 week ago.............now the sleeve is too short............a big blob of skin sticks out the top,.....................and.............they didn't send the "glove which was also custom made)..................put the thing on, and it is uncomfortable as hell...................and this place I dealt with came very highly recommended...................fed up, and today have to get on the phone, and "try" to be nice................................to the people who orderded and measured the sleeve.....................wish I too could get one off the rack..............no, I had to have this arm with batwings, which required custom fit......................shit where's the vodka.
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Ducky, my first custom glove took 5 tries to get it right: they sent the Juzo rep out to deal with me and my experienced fitter.
And, when she re-ordered, based on the same measurements, the new glove came with a huge wrist--it was visible.
The Juzo rep told us that the machines have inherent variablility, and it really doesn't matter for leg stockings but a centimeter here or there is a big deal for an arm.
Five tries. And Juzo had to eat the cost.
Kira
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This style of fit is daft, at our age and beyond, as most BC sufferers are, how many of us do not have batwings of some size, particularly when they tell us no heavy lifting, so whatever muscle you used to have starts to shrivel and turn to flab. How is this not part of the standard expected shape?
Kittydog I share your experience with sinuses, have lingering low level of something unpleasant that needs to be drained every morning. I can miss out the SLD occasionally but i really can't skimp on the two hot teas, lie down again and roll and tip for ten mintues to shift the respiratory-grot before the day starts. What fun eh. uggg indeed.
Outfield this made me laugh: when you wrote: "I worry more about what foul things may be lurking unseen on this stuff, since I've got two little kids and three animals". I guess if they are all accounted for, there's nothing nasty up your sleeve...
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Outfield, a couple of years ago during a big flu scare, we surveyed a bunch of compression garment makers to ask them how we should keep our gloves germ-free, since we can't wash them like we would our hands. Those that answered said they'd never been asked that question before
, and the only advice they could offer was to be sure to wash the garments every day. So we all brainstormed and came up with a few suggestions. They're here:
http://stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#GLOVES_AND_HYGIENEHope some of that helps
.
Binney0 -
Hey Binney, the page no longer exists.................
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Helloooo Ladies
I will be reordering my sleeves soon.... should I be looking more towards the Juzo vs Jobst you think?
And any thots on chest compression thangs? for truncal issues? Brands? Types for chest/ pits/ ribs on the sides... heading towards my back
This question has been on my mind... and I am hoping that this truncal LE flaring is heat related! please tell me you find it quiets down in fall/ winter/ spring..... this has been such a grrrrrrrrrrrrr summer. A GROTTY SUMMER!
hugs
brazos
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Ducky, I emailed our webmaster. Thanks for the heads up
Kira
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Ducky, sorry about that -- my goof-up. I didn't do the link correctly. Please try it again and tell me if it's working for you now.
Thanks!
Binney0 -
will do Binney,,,,,,,,,,,,,although I guess I don't have to worry about washing and care, until the fools get the sleeve right..................pretty sure this one is going to go back too...........I am really disgusted, but will do the website, just for the info for when I have to wash it.
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I am so excited -- I just got my new custom Juzo all-in-one glove/sleeve day garment, but darn the fingers are really long -- they go beyond the tips of my fingers.
That said, the finger circumference seems about right. It's definitely going to need to be remade/altered, but I'm not seeing the LE therapist who fitted the garment for a couple of weeks. I'd like to wear it some in the meantime, if only to determine whether it needs to be altered in any other way.
I need the group's collective wisdom: do you think it is OK for me to wear the garment despite the fingers being long?
KS1
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oK, do any of these people get things right.....................I was excited too, but the air left my balloon quickly when everything didn't fit.............and neither did their second try...............
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Honestly Jo, not sure it matters..........I had 2 custom made Jobst, and neither was made right............not sure if it was the person who measured, or the company itself........guess its a crap shoot.
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KS, do you mean is it okay for your lymphedema if you wear the thing with long fingers, or do you mean is it okay to wear it and return it? As for the first, it depends on how the ends of the fingers fit. I had gloves where the fingers tapered toward the top once, and it made the tips of my fingers swell and turn blue.
On returning garments, each company has a policy and a time limit on returns, so be sure you come in under the wire on that. Aside from that, the point is to wear it enough to find out if it works for you or not. You might even find that the fingers slip down as you wear it and you may not want them shortened. Just a thought.
Keep us posted!
Binney0 -
I've had custom gloves made by 4 companies, and, none were right the first time through. I think the problem isn't with a particular company, but rather that it is really hard to fit gloves. A half a cm too long or short or two tight or loose might not matter that much for a sleeve, but for a finger, it is the difference between a glove that controls swelling and one that makes it worse.
The particular glove I just got is a juzo glove/sleeve combo. I ordered a glove-only juzo in the same material a few months ago. The glove-only had to be sent back because of an odd bump of extra material in the thumb, but when Juzo remade the glove, the fingers and thumb fit wonderfully, and hopefully, I will have the same experience when I send this garment back. That said, I find it annoying how short a time window garment companies give for returning garments. Juzo has a 14 day window -- my experience is I'm lucky if my LE therapist has an opening in 2 months, never mind 2 weeks! I called to ask for an extension, but was told my therapist had to request it. Why isn't my calling enough?
Binney, my question was about whether it was bad for LE to wear fingers that were too long. But, after reading your post, I took off the glove to see what my fingers looked like. Two were a lovely shade of purple. Examining the glove, the glove fingers for the two fingers that turned purple are very tapered whereas the other 3 glove fingers are not. Thank you SO much for alerting me. KS1
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Okay, I've had custom gloves/sleeve made by Juzo. How do I know if is right? I didn't really research that much before I order them, so I bought the Juzo Silver Expert Arm Sleeve for the antimicrobial benefits, heat dissipating, odor reduction, yadadadada.... but when I tried it felt so unconfortable, I don't have any idea which could've been a better choice. Help?
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Ralston,
The website stepout-speakup.org has illustrations of poorly fitting sleeves. Some of us need no illustration - I knew thesleeve that gapped open the upper 3cm or so on my arm was no good, as was the glove that gouged me in the thumb web
I DO havea smorgasbord of things to cover my sleeve an glove while i wipe up the poop or voimitl It's the regular life that concerns me.
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im not a pro; by any stretch of the imagination.. but i've been at it long enuff to have tried a few... i like jobst for every day. iwear a glove, and the fingertipss are the MOST imp part. they can't be long, or they turn purple. i need the compression ON the tips, (but then, not too much) when im in the house, i like the Gottfreid gloves. in hindsight, the next pair i get i will get longer. i thiink its very imp who your fitter is. thats' my biggest frustration! we live in fla.; and they won't let the therapist do the measurements, gotta have a fitter. so , now, she consults with them.. they don't like it, but too bad. the 1st set of gloves took 3 tries. and now, i have still to replace the set of jobst i misplaced...
as far as sleeves, i love the two sided lymphedema ones. i think they're the bomb... hope that helps some.......3jays
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Okay. So now I have nerve pain on the inside of my upper affected arm running down to my elbow. In reality, it's probably been there for some time but not too bad. Just recently, doing MLD makes it much worse, whereas before MLD has always helped. May have been triggered by doing LE exercises which I hadn't done in a while, but not sure. If wearing my sleeve or doing MLD makes the nerve pain worse, any suggestions on how I should manage this until I can get it evaluated? Appreciate any suggestions you may have. Oh, and did I mention, GRRRRRRR I hate LE!
Deb
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Okay. So now I have nerve pain on the inside of my upper affected arm running down to my elbow. In reality, it's probably been there for some time but not too bad. Just recently, doing MLD makes it much worse, whereas before MLD has always helped. May have been triggered by doing LE exercises which I hadn't done in a while, but not sure. If wearing my sleeve or doing MLD makes the nerve pain worse, any suggestions on how I should manage this until I can get it evaluated? Appreciate any suggestions you may have. Oh, and did I mention, GRRRRRRR I hate LE!
Deb
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Well, my mom has joined this 'swell' club, denial is not a river in Egypt anymore. She had her mast in 2001, has been doing fine. Although not been seen for baseline measurements, she has followed most of the reduction practices these past 10 years. Saturday evening we had a meeting at church outside in the picnic shelter, she showed me Sunday afternoon where she had been bug bitten Saturday on the inner elbow of her mast side arm. It had an area about 3 inches around that was red, hot and swelled. I told her to draw around the area to mark where it was and gave her some of the other hints (keep arm elevated, drink water, pump her hand, go to the ER, etc.). She didn't go to the ER but waited until Tuesday to see her doctor (because of holiday). By then the redness was mostly gone but he did note that her right arm was visibly larger than her left. He seemed to think that the swelling would be down before she got an appointment (2 weeks he thought) to the therapy clinic. She will be seeing the therapist on Monday or Tuesday. I will try to help her with her treatment.
Sheila
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Sheila, that stinks! I do think denial runs rampant--amongst our doctors and our fellow bc sisters. We are the club no one wants to join.
She's lucky to have an expert for a daughter who can guide her through this.
That Avon position paper made me realize that early LE lurks, is not visible, and is very common and visible swelling means it's progressed--maybe it will resolve spontaneously, but you can help her keep it under control.
As a daughter, it's hard to help your parents, but you do the best you can.
Kira
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Sheila, I'm so sorry!
LE should never become a family affair -- but she's really lucky to have you. Deciding to go to the ER is always so difficult, but it sounds like she managed safely, so that's a good thing. Greet her for us, give her our condolences and our encouragement, and keep us posted.SiS, is it possible you're dealing with cording? Don't do what causes pain, but how about elevation, staying well hydrated, and doing some deep abdominal breathing? If you know how to wrap you could do that lightly and gently, or if you have a night garment you might try using that during the day until you get help. Let us know what you discover!
Be well,
Binney0 -
Binney,
Thanks so much for your suggestions, I appreciate it. I thought about cording and looked at pics on the SUSO site but don't see anything that looks similar. There is an area that seems rather firm and very tender. Will follow-up on your suggestions and let you know what I discover.
Deb
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Thanks Kira and Binney, I wouldn't call myself an expert, I need to get back in for a new eval, I have noticed some swelling on my wrist area just behind my swelled thumb area, but my gauntlet seems to cover that area. I did see the therapist this afternoon in the hall at the center when I was waiting for an exercise class and she said that I need a new referral from my dr to see her again
. I have had the worst luck with family doctors the past 3 years. The doctor I really liked and agreed to send me to the therapist left the county, the doctor that replaced her just didn't get it (LE), then left suddenly. They were not going to have a doctor to replace him for 3 months and other doctors in that practice would not see me (said I would be a 'new patient' even though I was a patient in the practice for over 3 yrs) so I changed practices last year. This month the physician assistant I was seeing at the new practice (who got it) left the practice but they have another doctor that came right in to see his patients. I will be seeing the new doctor on Monday when my husband goes in because he needs scripts renewed and I know where to send the various scripts (some mail order, some walmart $4). I guess I will have to make an appointment to see him to get my referral.
Sheila
Sheila
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Deb, cording can be tender. Does it hurt if you're not doing MLD or wearing compression?
LE does stink big time.
I'm kind of at a loss as to what is causing it, but you can pinch nerves--is it in the upper or lower arm?
Totally agree with Binney--avoid pain, and do all the usual stuff to relieve it--hydrate, elevate, deep breathing.
Area that feels firm and tender does make me worry about an infection--can you see a doctor today? Also, they always test to rule out blood clots in our arms, and it's rarely positive, but I'd have the doctor feel it and think about that.
Let us know how you're doing. Sorry I missed your post earlier.
Kira
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Hi Kira,
I am at a loss for what is going on too. Such a change to all of a sudden not be able to tolerate MLD. Went to LMT yesterday. Terry is usually able to work wonders but instead his MLD exacerbated the pain as well. Pain is on inside of upper arm and runs down to elbow. Could be a precursor to infection but no sign of redness or unusual swelling that I can see. Have antibiotic on hand if situation changes. Will contact dr in am if not better by then. In the meantime will follow yours and Binney's suggestions and stay away from anything that exacerbates it.
I truly appreciate your input, thanks!
Deb
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Deb, I'm sure you'll watch it closely--with firm and tender, I don't think it's a nerve, but likely some local swelling. The ulnar nerve runs down to the elbow (funny bone), but it's usually pinched below the elbow.
Just hope it disappears as mysteriously as it appeared.
Sheila: that rots about your primary care doctors--it's actually illegal to not take care of a patient of a doctor who left--it's called "abandonment". Hope the new person gets it, and if they don't send them over to the "Essential" Page on stepupspeakout
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
There's a slightly new version of it, that's not up on the web yet, it includes the new Avon Position paper
http://www.avonfoundation.org/programs-and-events/lymphedema-information.html
And because of that position paper, Binney and I are pushing the bioimpedance people to answer our questions about their device. We'll let you know if we get answers.
Kira
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went to the LE therapist today...............she was livid with the fit of the 2nd custom sleeve.............told me send it back, and not go there again.....................she apologized for sending me there, but this woman is the best in her field...............she just had cancer, chemo, and rads, and an infection in her implant................my guess is she is not thinking too clearly, or possibly not ready for work and measuring yet.................will try someone else.............in the meantime I got an over the counter sample sleeve that the LE therapist had,and she also gave me a "Slippie" to put it on with so I wouldn't have to struggle so much with it..............on to the next chaper.
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