ALL THINGS Gloves and sleeves
Comments
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Wow - amazing you can sleep in that, I find that I rip my JoviPak sleeve off in my sleep. I have rebound swelling when I take of my day time sleeve, but it usually goes down pretty fast, none with the nighttime sleeve though.
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Liinda I'm still getting used to it. The vest I have no trouble with but if I wear it without the sleeves, I have swollen arms in the morning. So its all or nothing for me I guess. I only wear them when I'm in treatment for LE and need to keep the swell down.
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Gma, my kids call my night gear my "space suit," and I don't even have the face mask to go with it (my DH does, though!).
Not real romantic, but at least we both wake up capable of functioning through the day (more or less....) Have you noticed a difference with the CPap--for DH it was like night and day. Amazing!Hugs, and thanks for the pics!
Binney0 -
Starting to feel a bit different - DH is sleeping better! Unfortunately, there is more going on because I still wake up about 5 times a night. But my AHI levels are great - so- no doc knows what to do with me... I see the sleep doc next month - hoping that all the drug changes will settle down so we really can see what is going on. DH calls me an alien!!
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Great pics, Gma!
Five hrs is a long time to sleep that way- good for you .I love the blue sleeves, and I see you have gaunlets. How were you able to get the finger swelling diown enough ? Any tips ?
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Purple - my swelling has mainly been in the upper arms and torso - When I first feel any swelling in the lower arm, I put the sleeves and gauntlets on, drink lots of water and MLD soon after - By experimentation my LE Therapist and I found if I do extra belly breathing I pee it out instead of keep it. The only other thing I do is elevate arms and hands at night. When that doesn't work I revert to my gloves. and my LE therapist. I can't afford to get colored gloves or any more than I already have Thanks to someone special out there
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By experimentation my LE Therapist and I found if I do extra belly breathing I pee it out instead of keep it.
Wow!
Its great that it can have such an impact on your LE, gmaHappy to see you seem to be managing so well.
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Its great that it can have such an impact on your LE, gma
It is hard and I slide alot.. The LE therapist says, "life happens. Don't beat yourself up" He reminds me of this every time I see him. I have one more appt. with him, then he will let me go on my own again. DH says arms look so much better this time. I am dealing with the nerve pain and swelling still in my breast, but if I keep that there and not my arms, I should be ok. Still thinking of having an Mx to try to get rid of the pain, but I know the LE and costochondritis will still be there for me. I just try to go day to day and deal with whatever comes my way..
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Anyone using a lymph pump? I am getting one to help with the daily MLD. I have had trouble doing it well because I get cramps in my other hand after about 10 minutes, have had only slight reduction in arm volume with 10 LE therapist visits over 4 weeks and feel like I could make more progress if I was able to do MLD more appropriately and long enough, so have to purchase the pump out of pocket because insurance wont even consider approving it because I haven't had 4 weeks of failed home therapy - I am just not willing to let this go for another 4 weeks for a 60% chance it will be approved, I suspect fibrosis and skin changes could get worse during that time. From what I have read here, it looks like getting aggressive early in the game gives better results.
I am still bandaging 24/7 because every time I try the adjustable garment from Solaris it seems to make the swelling worse rather than better. I know it feels different than bandaging, but suspect I am just not adjusting it properly. The LE therapist just says it will take trial and error, and may not work for me, but so far, it seems it has been all error.
She keeps telling me not to expect too much. Am I really NOT going to get any better than this???? Arm volume reduced by 2% and they are calling that acceptable???? At what point should I just accept this and move on????0 -
Am I really NOT going to get any better than this????
Linda
The truth is, your LEist just isnt sure
As for 'acceptance' it does not mean resignation.
There are ladies here who have accepted lE , but then went into graduual weightlifting, exercise, night sleeves etc etc etc .. and some improved a lot, some a little and some status quo and .... well, you get my drift.
The trial and error thing is what hurts the most precisely because of what you said- the room for error!~
Dont give up... keep plugging away doing all that you can. Only time (and trial and error
) will tell.Best Wishes.
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I am so frustrated I want to spit. Back in early March, I was measured for new custom Juzo garments. The glove came back grossly wrong (3 cm too long in the wrist, middle finger so loose that it didn't even touch the skin at the top). Both were clearly manufacturing errors because the wrist length and middle finger measurements were EXACTLY the same as with my previous garments (that fit correctly).
I returned the garments, sending pics to my DME who claims they sent them onto Juzo. Juzo admitted in writing that they mismade the length of the wrist, and verbally acknowledged that the middle finger was too loose. More than 10 weeks passed and I just got the remade glove. The length is acceptable (though a cm longer than it is supposed to be), but the middle finger is still too loose!
First Juzo told me be remeasured, but I know that the problem isn't my measurements because previous gloves with the same middle finger measurements fit well. Now they are saying that they will "consult" (again) with the Germany manufacturing site to try to figure out what the problem is
I have tried many brands of garments, and Juzo works best for me but what the heck is going on with Juzo's Germany manufacturing plant! Why does it take 10 weeks to remake a garment? Why can't they make it correctly? Is this "investigation" going to take another 10 weeks and result in another mismade garment? What exactly am I supposed to do in the meantime.
KS1
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KS1, that is horrid. I returned two (in a row) Juzo off the shelf sleeves that were visibly wider at the top than the one I was replacing. No argument from Brightlife, where I bought the sleeve, but it took the third sleeve to get it right, even though the sizing was supposedly identical to what I had been wearing. Juzo eats the cost of all these errors; you sure would think they'd want to get their house in order if for no nobler reason than to save a few bucks. I've always felt they were a terrific company, but it sure seems like their slip is showing lately.
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Oh, I just had a thought--how to describe this too-common experience of multiple re-do on garments and it takes forever. My description: we're playing slow-motion garment ping-pong. And it's not a sport we ever want to bring to the Olymphic games!
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Grrr!
So sorry KS1Somehow you must impress upon them that this is a delay in your LE TX which could result in add'l swelling and further tx which you will be expecting compen$ation for .
I have a feeling this might work- sounds like you have ben very patient with them. I would also tell them I am on a forum with tens and thousands of BC women and I would like to post a good outcome with expedited results !In the meantime, do you have a glove? have you had any success with OTC like the IMAK ?
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Purple, I talked too soon or jinked myself - My thumbs started swelling this week and can't seem to fix it - Called my LE therapist (who said he would teach me to wrap if the time ever came) He suggested that I use my isotoner gloves at night and see if that helps otherwise we are learning how to wrap tomorrow
Being tomorrow is supposed to be my last day with him - think I'm learning how to wrap --- It is what it is.... rats rats rats. I know its the heat and if this heat is going to get worse... enough said.0 -
Gma - It helps to take someone with you, then they can help you with the wrapping if necessary!
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I don't have anyone
- DH is on overload and doesn't want any part of my LE treatment - Just tells me to do whatever I need to do.0 -
Gma, you can do this!
Be patient with yourself and give yourself time to practice and learn. Bummer that it's your last day, so tell him you need to be able to come in and just have him check the look/feel of it once in awhile as you learn to do it--should be no charge, since he neglected to teach you until now.Onward!
Binney0 -
KS1, in my experience Juzo seems to have problems from time to time making custom fits. They say it's the machines, the computers/programmers, different operators, whatever. However, if you can persevere, they seem to be able to get it right in the end. I hope this happens for you. Hang in there.
Edit to add this link. http://community.breastcancer.org/forum/64/topic/779785?page=1#post_2764370
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KS1--I just had the same problem with a custom Juzo glove. I have a new fitter, and the first glove was way too loose in the wrist and the fingers were too long, the second was better, but the index finger was too loose and the seams were unraveling, and the third is better, but the index finger is still not as snug as I'd like it.
It is a new fitter--but she's been doing this for >20 years.
My first Juzo glove with my former fitter went back 5 times, and they called in the regional rep!
Also, this process has taken greater than 4 months. I'm due for another glove any minute...
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Being tomorrow is supposed to be my last day with him
So sorry gma, but thank goodness you've got that appt.!
Learn all you can, but DO ASK LEist to write things down. I know kira has a detailed diagram of hand wrapping on one of the threads as well. You can do a search.Hope all this resolves soon.
Take Care!
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Previously I had no arm swelling & was only wearing my sleeve for Flying & Lifting weights.I started wearing it everyday last Saturday. (finally the pain from wearing it all day has gone away-different thread)So- I need to get at least one more sleeve. (I only have one)I have the Juzo soft sleeve, 2001 Max, regular. 20/30 Cinnamon- which seems to be a pretty good color for meMy measurements are:Wrist 15 cmmid arm 20 cmelbow 24 cmupper arm 27.3 cmunderarm 29.5 cmMy Upper arm increased by 1 cm just before I started my sleeve. it is back to its 29.5 cmI was pricing at Brightlife.I see they also have a Lymphedivas in black. Would the following be similar to the Juzo?LympheDivas - Onyx Armsleeve - LympheDivas
SKU: LD-AS-04-20-30-small-regular-dgtop
(Length: Regular 16.5-22", Size: Small, Top Band: Diamond Grip-Top, Compression Level: 20-30mmHg (Class I))Do many of you wear black? I often wear back tops when I go out. Is the 'skin tone' do you feel less noticeable? Well duh, over black...But does a black sleeve with a Black tank top...Look like a 'fashion statement' ? LOLWhat other sleeves might you recommend that are less $$?0 -
Brightlife sells their own brand, called Allegro. I have a one-piece sleeve/gauntlet that was very inexpensive, and it fits me well. I wear it when doing seriously dirty work outside, like gardening, when I know I'm going to be grinding dirt into it despite wearing a longsleeve shirt over top. They make separate sleeves and gauntlets, too, and I have a gauntlet and it fits just fine. Some time ago, someone posted a review of the Allegro sleeve and found it to be way too long. I haven't tried the sleeve alone, to have an opinion. The sleeve/gauntlet combo is a good length for me. In any case, Brightlife's return policy is great, so there's little downside to trying the Allegro. If you're looking for truly inexpensive, that's where I would start.
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I agree with Carol about BrightLife being great to deal with.
Black is a lot more noticeable, but I've gotten comments about it being a fashion statement, and even had young gals drooling and asking me where I got them (huh?!!) For some reason I don't understand, black garments are usually tighter than the beige one by the same companies, so ordering from someplace with a great return policy is the way to go. (Juzo comes in black too, I believe.) Living as I do in a desert, I don't wear black in the summer.
Let us know what you discover!
Binney0 -
Thank you Carol & Binney.
I figure if I get a Black sleeve it will be mainly for evenings out-Probably cooler weather.
The Lymphedivas Sleeve on brightlife in black is almost the same price as the Juzo black .50 deference...Do people like one better over the other? Decisions, decisions...I am not good at making them.
I like the price of the Allegro Carol. I do not see a sleeve from them without the gauntlet though...am I missing it?
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Dejaboo - I have trouble with aloe - therefore I'm afraid to try the lymphedivas - I like my juzo dreamsleeves - Haven't had an issue with my off the shelf ones. I haven't had to get custom.
I'm afraid I will learn to wrap today - all my gauntlets are suddenly too tight on the thumbs and they go numb.
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Am still in the very frustrated stage - have been in treatment for a month and still don't have a good handle on what I can and cannot use to reduce swelling. I am sick of being in bandages!
Tried a Solaris adjustable sleeve but got more hand swelling and didn't seem to help arm at all. Tried it with glove, tried it with wrapping hand, still not working right.
Today I got my new Juzo sleeve, which initially felt pretty good. Added the Juzo glove, which also felt pretty good to start with. As the day went on, my hand felt puffy, and about 5 hours into it, started having severe pain around my wrist. Took off glove, hand very puffy, but fingers were GREAT, and obvious red indentation in the swollen wrist. Went to have LE therapist check, he wasn't a whole lot of help with suggestions, so I will discuss with the other one on Monday. Meanwhile, I am struggling with what to do that won't make things worse. I am registered for a 6-hour painting workshop tomorrow, know I cannot paint in bandages, can barely manage with the glove. Should I cancel and not go? Should I just say to hell with it for the day and go anyway, doing the best I can? How long does the "trial and error" phase last????? I am getting very tired of all the errors..... Should I just order a bunch of sleeves, gloves, sleeve/glove combos, and see which work and try to return those that don't???
So, I am trying the glove by itself with a little padding across the top of my hand, WITHOUT the sleeve right now, trying to figure out just which part is causing all the problems - part of the trial & error thinking here. I am just going to do this a few hours this evening, then back in bandages for the night. Does this seem reasonable? I feel like my thinking and problem-solving skills are being sorely tested.
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Linda, that's a good plan. Two hours, tops. In that amount of time you'll have a very good idea of the likely outcome and won't risk extensive damage if it isn't working. Go to the painting class. Enjoy it. Consider it yet another experiment in coping with the stupid LE. If you experience swelling go home and wrap--at least you tried. If it doesn't swell too much, and you make it through the whole six hours, go home and wrap anyway so the next day is great too.
The problem-solving skills sometimes just have to give way to living our lives.
Looking forward with you to a fabulous, creative, satisfying day tomorrow.
Let us know how it goes!
Hugs,
Binney0 -
dejaboo, here's the Allegro sleeve, for $20. http://www.brightlifedirect.com/allegro-20-30mmhg-compression-armsleeve.asp
If you try it, I'll be interested to hear what you think.
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Carol - I read the reviews on that sleeve and they say they are too long??? Are they - how long are they - I'm short all over and hate to buy something I can't wear.
Copied from my other post last night:
So how long did you all survive your first wrap before you ripped it off.?
The LE T just wrapped the hand after I put on my sleeve. This was a learning thing but my left thumb and wrist were a bit swollen. So he wanted to see if it helps the swelling or not. We decided I need to see him once a week for another month until we get the hand swell in control and make sure I know how to wrap.
Oh, and good news is the right arm is doing great. Only one spot bigger tha last measurement.
I need you all to tell me I can do this..... Grrrr0
