ALL THINGS Gloves and sleeves
Comments
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Purple, rooting for you! Hope you get good answers that will help you overcome all those troubles.
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I don't remember if it was in this thread that I wrote about a supplier who had charged me twice and was dragging his feet. I admit I spoke too quickly. He actually called me after work hours to apologize after he had checked out the issue. He said that it never should have happened and that the bookkeeper or whoever goes over the statements should have caught it. Not only that, but he deposited the money directly into my account so the story has a happy ending. Lesson learned - always go over the details of your credit card statement!
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Just wanted to say that Juzo remade the custom glove that was mismade and the remake fits perfectly! Total elapsed time between my notifying my DME company and Juzo and me receiving the correctly made glove was 20 days. I wish the glove had been made correctly to begin with, but a 20 day turn around time isn't bad at all!
I think the secret to getting Juzo to acknowledge incorrectly made garments and remake them quickly is sending them a very thorough explanation and photos explaining exactly how a garment is wrong. In this case, the photos comparing the mismade garment and correctly made garment (using the same measurements) made the mistake so obvious that Juzo started the "remake" process before having received the mismade garment.
In summary, in the past 10 months, Juzo made 5 custom gloves from the same measurements: 3 fit perfectly, 1 was a tad loose overall (but acceptable), and 1 was completely wrong. 80% success rate. KS1
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Lindan3 - haven't been here in awhile - you asked me a question a week ago about how fast I responded to Kinesio tape - within a few hours I would notice a difference. Normally, I would let it on about 2.5 days and by time I took it off, swelling in hands and fingers were gone.
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Denise, thanks. I am still fighting the finger and hand swelling, and must not respond to the tape ... did you use it only on hand/fingers and elbow? My new LE therapist taped at elbow and over shoulder - about 4 tapes altogether, but didn't do the hand. DH and I did hand as shown in the photos, but I didn't notice much change. That being said, my swelling responds rapidly, both in the positive and negative directions with gloves, wrist compression, using hands, etc. Best results seem to be with Mediven95 gloves, but the material is so rough on my skin, and all the joints in my hands and fingers feel like I am 98 years old with arthritis as I have not been able to use them, move them, stretch them, strengthen them, etc. Bandages and gloves both keep me so severely limited in activities. Am on vacation with family for 2 weeks in FL - hot, humid. Not able to take care of LE with all the family stuff going on, so again, not really sure what is working and what is not working. Thanks again, and I will check in again later.
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Lindan3 - The hand is tricky but easy once you are properly taught. It has to be tight to create a pumping action. My therapist taped fingers, hand and elbow. Some of the other stuff we tried, but never had any results. She knows I am game to try anything - LOL!
I have the Mediven 95 one piece gauntlet sleeve which has been good for me since my hand is down. They are all just so darn hot - as you well know being in Florida right now! Your whole body goes up to about 120 degrees! Crazy!
Good luck!!!
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(((Purple)))
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I am so frustrated! I just came home from DIEP reconstruction yesterday. I wore my compression garments while I was in the hospital. I was at UW Medical Hospital in Seattle, a large teaching hospital, rated 7th in the nation. Toward the end of my visit, 2 nurses came and asked me about the sleeves, like how long will I have to wear them? And they never see patients with them. They were surprised when I told them it's usually a lifelong condition. It's true, I never see anyone wearing them, neither in everyday life or at the cancer center. The OT gal also asked me about them. She said to me, "That's not true! You don't have to wear them for the rest of your life!" I'm so tired of explaining and educating those who should know. It's a lonely and sad place to be.
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((((Jeannie)))) Sigh, it IS frustrating.
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Juzo last the longest, the 2000 series is softest, they will try to sell you special detergent.....not needed. Hand wash in a small amount cheep baby shampoo (usually $1.00 at dollar general). Do not use regular detergent and especially not woolite as they break down the fibers. When they are thouroughly rinsed, place in an absorbant towel and wring to get majority of water out (do not wring without towel). Then lie flat to air dry. Once a week you can toss them in the drier on no heat or low heat when its almost dry(no heat for natural rubber garment, not the best garment by the way) the drier will help to retsain its shape better. NEVER wear a wet garment. This method will extend the life of your garment by 1-2 months. Juzo will normally last 5-6 months with daily use and daily wash, if you care for it properly, you should get 6-7 months or more out of it, depending how much you wear it. ..................Sigvaris are nice but they only last 4 months tops and most insurance companies only allow 2 per year. Jobst and medi are just ok, but they are durable garments. If you need an answer on any other equipment, just ask.....I know just about every product available.
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MamaRay, there are a couple of options for more chic with less cash. One is the "seconds" page at Lymphedivas, where the prices are $35-45. There aren't very many at any given time, but if you keep an eye on that page you may come across something terrific at a bargain price.
The other option is the couple of companies that offer "sleeve covers," but if you choose those you need to size them carefully and check them out with your therapist to be sure they're not adding compression or restricting flow at the top or wrist. I've never dealt with any of them so can't recommend them, but you can google Slice of Fashion, MySassySleeve, or WarriorWear to see what they have to offer.
Let us know what you find!
Binney0 -
I get to see someone about my Lymphedema on 18th August.
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Ali, glad you have it scheduled!
Let us know how it goes.Hugs,
Binney0 -
Oh, Ali! I am so sorry you are having LE added to your burdens!
((((Hugs))))0 -
I've been bad today - Didn't wear my sleeves for work - I've been so compliant lately I just needed a break. My upper arms are achey.. Does anyone else get that way?? You just want to rebel??
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Just wanted to bring a little hope. I got LE almost immediately after MX in Oct 2011 with 14 nodes removed. Then it was pretty much under control until Rads in July, 2012. Then got a little better, but still required wrapping. Then in Jan 2013 I lifted 3 plastic bags of groceries without wrapping or sleeve and POOF POOF POOF. HUGE HUGE HUGE - arm and hand swollen and fingers were horrible.
Ran to LE Therapist - wrapped wrapped and wrapped - taped taped and taped. Now 7 months later, I am doing well with wearing a Mediven 95 gauntlet/sleeve for only 8 hours a day (my LE therapist and I discovered this works best for me.) Night garments tend to make me swell more. My arm is still a little larger, but not too bad. My hand and fingers are normal.
Never in my wildest dreams did I think it would get this good again. I know it can change in a minute, but I am sure enjoying it while I can. I appreciate each and every post here that has helped me so much.
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Denise, thank you for that encouraging post! It's easy to lose hope and see no light at the end of this stupid tunnel--thanks for the reminder that knowledge and a bit of good self care can make all the difference!
Double chocolate brownies all around!
Binney0 -
Yum yum, all thanks to you Denise! I love Binney's brownies.. Thank you for reminding us that things can change.
This heat seems to get me down, but today the swell is doing well.. I put the sleeves and gloves on today - feel ok with that..On a hot day, does anyone know how to keep the sleeves from glueing to your arms? It almost feels like I'm peeling my skin off at the end of the day..
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Woo hoo on the double chocolate brownies
I appreciate your kind words!!!0 -
Speaking of heat. We have a thunderstorm coming in and during my watering outdoor plants this morn my arm felt so stingy and tight in my sleeve. That must be the humidity. Bring on that storm so we can get our arms back to their normal LE self. Since I have been inside out of the sun my stingy arm has settled.
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Am really bummed. Just got home from vacation, had box waiting for me from Brightlife with Jobst bella strong sleeve, CCL2, very excited and hopeful. Discovered it does NOT have relaxed wrist like the regular Jobst, so same old problem as with all other sleeves I have tried: wrist compression is too much for the hand. Back to bandages. Am I condemned to life in bandages? If so, not really compatible with any type of quality of life. Have been told over and over to look at the things I CAN do rather than what I cannot do - basically, there is NOTHING I can do that makes life worth living without the use of my right hand. Still looking for hope, finding very little. Wondering if amputation and a hook would give me more functionality without the 4-6 hours of care needed each day. This is worse than taking care of a baby!!!!!!! Ooops, wrong thread again .... sorry ... anyone seeing OT for help with activities of daily living and other things? Wondering about adding a gauntlet to glove to get better hand compression, or adding bandages to glove to get better gradient compression - gloves working great for fingers, and much easier than bandages, and I can almost manage a jpen or pencil in gloves but not in bandages .... wondering how much experimentation is advisable while waiting another 2 weeks for new LE therapist session ....still not sure about how much to expect from taping, but will be checking with Denise on that soon. Thanks, y'all!
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Linda, hang in there! No, you're not doomed to wrap forever, but apparently there's still a bit of (maddening!
) waiting ahead until you can work out the perfect solution for YOU. (I did just notice that LymphedemaProducts has a sale on Jobst Bella Lite, which has reduced compression at the wrist, if that's any help--sigh!
)Have you tried a Solaris Palmar Swell Spot in a glove for the hand compression? You can wear it either on the palm or the back of the hand, and it doesn't interfer as much with your hand use.
Quality of life--like the use of your right hand, for instance
--is paramount, and it's definitely possible. Don't give up!Onward!
Binney0 -
Oh, Binney, thank you so much! I will keep soldiering on for a while, it just gets tough to have such high hopes and get disappointed every time. I have been told I am "an intellectual optimist and emotional pessimist", which makes me laugh because it is so true. I KNOW this SHOULD get better, it's just that little amygdala in my brain gets hijacked sometimes and it seems like things will never get better. So thanks again, I will keep on keepin' on ....!
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Linda, this is a wild stab at an idea, but can you stretch the wrist portion of one of your sleeves to see if you can relax it just enough to work? Lots of women here put markers or batteries inside wet thumb or fingers of gloves or gauntlets, to force a little expansion. Could you try that with something like a water glass?
You are so beat up by this, and it's so understandable, and it breaks my heart.
Ladies, Binney got us started here, but we need some more creative suggestions for Linda!
Carol
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linda n3, funny! When i realized how much time it would take, and effort and care to take care of my arm, i sincerely thought amputation was a good idea too! Just dont say it to your drs.... I can never be in a protest, anymore either, cause i would be afraid off them grabbing my arms behind my back,.... its just all wierd. i only just recently, after 50 years, learned how to take care of my teeth, or comb my hair everyday! tomboy!wha?!!? I have to do this everyday? for the rest of my life? but we do learn what our arm likes, and when. just by trying. hate you are here
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Linda -n3
Here's a thought about the double compression problem where thevglove/sleeve overlap. I had a glove that I stopped wearing because the wrist was too tight. I took a seam ripper and carefully ripped out the seam about 1.5 - 2 cm and then threw a couple of stitches in to keep it from unraveling further. If you have a glove that you absolutely cannot wear because the wrist is too tight, if it is too late toreturn the glove, you might consider ripping out part of th seam
One other thought .... The default wrist length on custom juzo gloves is 6 cm. This means that there is 6 cm overlap between the glove and sleeve. For me, this is way too much overlap and my hand swells . I have juzo make my custom gloves with a 3 cm wrist length and the result is much less swelling0 -
Watch out for the Bella strong--they reformatted it as it was made with wool and many women broke out and it was always too short.
Linda, hang in there--the right garments are going to come into your life and you will improve and LE will fade to a less prominent place in your life.
KS1 put up with A LOT, and she is the voice of reason and experience and (especially compared to me) a non-complainer who has taken on the obstacles with perserverance and grace
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Here's a crazy question for everyone. I am working unspeakable hours each day at my computer, going on for several weeks already, except for time out for six days' camping. It's going to keep up for another two or three weeks at least. I have paid attention to ergonomics but my mousing hand is just in pain. It's not my LE hand, thank goodness. I have a brace/splint thing-y meant to support the hand, and another velcro-endowed hand cover, and I switch between them to help give some support. But what feels best is compression from one of my gauntlets, meant to be worn on my other hand, of course.
My question is: does the gauntlet give truly gradient compression, and can anyone think of any reason why I WOULDN'T put that much compression on my poor, miserable mousing hand? It's more compression than I get from the other two devices. I've tried it for just a little while, but I'm a little spooked by statements I've read that suggest some researchers believe that compression when not needed can cause LE in a susceptible limb. Not sure I believe that, but don't want to tempt fate either, because except for the loss of whatever nodes were in my breast on that side during the bmx, that hand is not at risk.
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Carol You would laugh at my set up on my computer being I have a 40 hour a week job sitting at it. I went to a rollerball mouse. My keyboard and mouse sit on a pillow to keep both arms raised with little pillows under each arm. I also find isotoner gloves work better than my gauntlets..
No wrist trouble anymore since my LE therapist and I experimented with different ways of sitting. Now don't laugh when you see the picture - The pillow with the keyboard and mouse sit on my lap as my desk chair reclines a bit to keep the pressure off my shoulders and elbows. I have revamped my desk since then but it has the same pillowage... LOL
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gmafoley, that's fabulous! I stand when I work, which keeps back problems at bay, but your set up gives me pause for thought, and I'll see what I can rig up this morning, along those lines. Thanks so much for posting the photo!
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