All things gloves/gauntlets/sleeves

mcgis · December 2013

Hi! Well it's been a roller coaster trying to get my auth for sleeves and gloves. I finally have an appt next week to be sized and order. I am wondering what your routine is with yours? My morning routine is to get up and shower (unless I took one the night before), dress, and start getting breakfast made. While eating I usually have time to get some deep breathing done and the exercises before taking my daughter to school. When I get home from that I do the manual drainage. When I wake in the morning my hand is a bit swollen and am thinking I should wait to put the glove and sleeve on till after my exercises and drainage? Oy, I'm just confused as to when I should put them on, take them off, how often do you take them off throughout the day (if at all), when do you get your exercises and drainage done...??? Any info on what works for you would be great! Thanks!!

mcgis · December 2013

bumping

carol57 · December 2013

bumping again. I have such mild LE that I only have to deal with it intermittently, so my routines are not at all routine. Hoping that others post their care routines.

Binney4 · December 2013

mcgis, hello!

I find that before I clamber out of bed in the morning and right before I go to bed at night are the best (only) times for LE self-care, mainly because I get caught up in other things throughout the day and don't get around to it. The exception to that is deep breathing and neck-node-clearing, which can be done unobtrusively anywhere. Riding in the car. Waiting for a light to change. Standing in the check-out line. Pausing between replying to emails. Watching TV.

Which sure doesn't mean I forget all about LE all day--don't I wish! But I've stopped beating myself up for not pausing to do Lebed stretches right after lunch or in the middle of the morning, or laundering garments in the afternoon. Just ain't gonna happen for me. Too much else to deal with.

There are other more disciplined women here with amazing routines, and I hope they'll post they're information. Please keep us posted on how you're doing.

Be well!

Binney

Kicks · December 2013

I do not have a 'fixed routine' for anything in my life, nor will I. Life is to be lived - not regimented as far as I'm concerned.

When I get up in the morning, before I get dressed, I put my sleeve and glove on. When I get ready for bed, I put my night sleeve on. I do my hr with my FlexiTouch (MLD machine) daily - morning/evening depends on season and what's going on (winter is mornings as I have to do my light box for SAD so 'kill' 2 birds at one time). I wear my day sleeve from when I put it on in the morning til night. Depending on what I'm doing, glove is on or off for short times.

For me! LE is just a 'bother' at times. It does not consume me or my life. Does not slow me down at all in all my outdoor activities. Ask all the questions you can BUT do not assume that you will experience what others have. We are each so UNIQUE!

Linda-n3 · December 2013

mcgis, I try very hard to keep some routine, but usually fail miserably! I bandage every night, try to leave them on and do Lebed first thing in the morning with bandages on. I am getting better at doing at least the first 15 minutes of central clearing, and if I am not rushed, go ahead and do the whole video. Then do shower and don sleeve and glove for the day. About 5 pm my favorite TV programs come on, so I try to do my FlexiTouch machine for an hour then, and follow that with MLD specifically aimed at trouble spots. Then bandage for the night.

I have had lots of trouble getting glove and sleeve that work together and not cause more problems than they correct. My LE is moderate, so cannot go without something on all day, although I have hopes that some day I can get it under better control and have some time out of garments, and occasionally I get just ticked off enough and rebellious enough that I go without sleeve for the evening if I am not doing anything that will stress the arm.

I keep a lingerie bag hanging right near my dresser where I keep all my LE gear, and toss liner socks, gloves, sleeves, and bandages for laundry, which I do about every 2-3 days. I have accumulated enough gloves and sleeves to get me through 3 days, not always the best, but I use my best ones first and sometimes have to use others while I wait for the laundry.

Hope this helps,

carol57 · December 2013

Ah, the laundry question. It's incredibly annoying to have to do LE laundry well before daily-life laundry merits a load in the machine and the time to bother working on it! I finally have enough sleeves/gauntlets to be able to let them pile up and stick them in the machine every 4-5 days with the rest of the laundry. Some are getting old and I probably shouldn't be using them, but I absolutely hate everything about laundry, even a quick little hand wash, so I am glad to have enough sleeves to let them wallow in the rest of the hated laundry pile!

Linda-n3 · December 2013

Carol, well said!!!!! One break I get is that DH runs almost every day, and does "the sports stuff" about every couple of days (if I can tolerate the smell that long, LOL) and so the lingerie bags go in with his stuff. Makes it a lot easier for me!

mcgis · December 2013

My glove and sleeve just got ordered today. We are starting with just one of each till we know if the sizing is right for me. So, I'm not sure what I'll do when mine will have to be cleaned. Perhaps I can hand wash quickly at bedtime and air dry over night?

Thanks for your replies. Keep them coming, ladies. I really need help getting my head around all of this. I know it will help my hand, and arm.

I have swelling in both but find that my hand is worse. Anyone else like that? Can you get away with just a glove or gauntlet and rely on the sleeve on flare up days?

Anonymous · December 2013

mcgis, I am one of those who handwashes. I guess I think maybe my garments may last a little longer this way and I'm only funded once a year. Once washed, I then roll them up in a thick towel and stand on it to get excess water out then put them up in the hotwater cupboard to gently air out and dry overnight. Theyre always dry by morn.

HTHs

mcgis · December 2013

bumping for more lymphedema girls

mcgis · December 2013

bump

bhd1 · December 2013

I so lld either first thing in morning or last thing at night. I have 3 arm garments that I wear 2 x each before washing

mcgis · December 2013

Still trying to wrap my head around all of this so if anyone else has suggestions, stories... to share I would greatly appreciate it! Thanks!!

Binney4 · December 2013

mcgis, here's a link to a video by a group of Canadian lymphers, in which they talk about how hard it is to get their heads around this, and what they've found that helps. A LOT of women have found it helpful in getting past that initial bewilderment, frustration, grief:
http://www.breastcancersurvivors-ethnodrama.ca/wat…

And here's a piece written by Patrick O'Connor, a tireless lymphedema patient advocate, about his own struggle "adjusting" to the demands of LE:
http://www.stepup-speakout.org/patoconnorcopng.htm

The "How you can cope" page at StepUp-SpeakOut has a raft of practical tips about all things LE, from women who've "been there," and you might find some of them helpful too:
http://www.stepup-speakout.org/How_You_Can_Cope_wi…

There's nothing easy about this, but we sure are here for you. Tell us how we can help.

Gentle hugs,
Binney

mcgis · December 2013

Thank you, Binney!! I really appreciate your post. I for sure am going to check out all of those links.

I had my appt. with my radiology oncologist today and her nurse said my LE will probably get worse and the Dr. said most times it stays the same. I'm just worried. I have a certified lymph therapist I see on a regular basis so I'm hoping with the sleeve and glove, exercise and manual drainage I can keep it under control.

Thanks again!!

mnmbeck · December 2013

I just got a sleeve and gauntlet today....it feels WAAAAY too tight for me! My PT has a glove and sleeve that she had fitted for her so she can show it as an example. She did that specifically so she can show patients how tight it should be, how it should fit, etc. When I was getting fitted, I was very surprised at how tight it was. I told the fitting person that the sleeve seemed way too tight, and the gauntlet was literally cutting off the circulation to my thumb. She consulted with another person and as they were looking at my numbers, I showed them that my thumb was actually turning purple! So, they changed the glove, but then decided based on my measurements, that the sleeve should be SMALLER! So, they put me in a smaller sleeve. The sleeve and glove seem double tight where they overlap, leaving marks. The new glove seems a bit better, but rubs between my thumb and forefinger. It feels like I have a 'hot spot', although you can't really see one, yet. Should the sleeve be really TIGHT? My PT described it as a 'gentle hug'....not a death grip? Of course....everyone is now off for the holidays so I can't ask!!! The people who fitted me said that it IS supposed to be super tight! Ugh! Is there anybody who has one of these who can clarify how tight it should be?

mcgis · December 2013

mnmbeck, i wish i knew. i'm STILL waiting for mine! ugh. i hope you can get some answers soon. and a sleeve and gauntlet that fit well.

my big question is a routine. do you wake up in the AM, get showered, dressed, do your exercises and manual drainage and then put on your sleeve? do you make breakfast and all first and then put on your sleeve? i suppose i'll just have to figure it all out. sometimes i shower in the evenings and sometimes in the AM. i guess i can just take off the glove when making meals and then put it back on when i'm done? what do you all do?

mnmbeck · January 2014

I was wearing a sleeve and gauntlet until the other day, when it was taken away from me because I am having some sort of reaction to it. But, I can tell you...I would usually get up, do MLD, and ideally then shower and put on the glove/sleeve. I'm not sure if that is right or not. I was told that putting on lotions/oils can cause your skin to react with the sleeve, and I was doing that after showering. But, that wasn't the cause of the problem for me. I tried to leave everything on until I did MLD again, then back on again right after. I never got the hang of the evening. I tried to leave it on until bedtime, and then I would remember that I had to wash it....and wait for it to be done washing so I could hang it to dry. I am interested to hear how everone else does it!

mcgis · January 2014

mnmbeck, sorry you're having issues with yours. i was told to put it in the dryer so it gets its elasticity back. hang drying doesn't do that.

mnmbeck · January 2014

You were told to dry it? I was told specifically NOT to dry it....and the directions that came with the sleeve said the same. Different brands, maybe?

carol57 · January 2014

Interesting--A check of three garment makers' sites says machine wash and dry are ok. Juzo says other garment makers' products cannot be machine laundered, but the other sites say yes they can, and Lymphedivas actually says do not machine wash. Here's a direct copy/paste from three sites:

Juzo website: Why is it okay to machine wash/dry Juzo compression garments? Without daily machine laundering, your garment is more likely to stretch out, over time. Other brands can only be hand washed and hand dried. Because of Juzo’s garment features, all Juzo garments can be machine-washed and machine- dried on a low-heat setting. Latex Free- Juzo only uses Lycra® compression fibers. Lycra® does not breakdown from heat and is the highest quality synthetic compression fiber.

Jobst website: CARE Hand or machine-wash with warm water and mild soap or detergent, or Jolastic^® Washing Solution. No chlorine bleach. Warm water rinse. Hang or lay flat to air-dry. May dry in a dryer on low heat or delicate setting. Placing your stockings in a mesh laundry bag will help protect them during the wash cycle.

Lymphedivas website: Wash garments as needed. Machine wash the garment in warm water using a gentle fabric detergent. Use a lingerie bag in machine. Machine dry at medium heat. Do not: wring dry, hand wash, dry clean, use any chemical solvent or bleach, fabric softener or any other laundry additive. Frequent washing prolongs the useful life of the garment and maintains the ideal compression characteristics. Using creams, oils and lotions may shorten the life of the garment. With proper care, your LympheDIVAs sleeve and gauntlet should last up to six months.

Kicks · January 2014

My garments are Juzo and from Carol's post you can see it says it's OK to machine dry on 'low heat'. I've never had any problems with doing this with any of them. If I only dry them (no other laundarylaundry at that . me) - I add a clean dry bath towel so they aren't just flopping around 'all alone' on 'fluff'/cool. Does it help/matter - don't know just seems sensible to me so I do it. There have been times when I've been away from home for a period of time where no machine washing/drying was available so had to hand wash and air dry - they do NOT turn out as soft and supple as when machine done in my opinion.

Though it's not started in the info Carol posted, in the info that comes with my Juzos, it definitely states to not use fabric softeners or dryer sheets with them.

pkeiles · January 2014

Hi There All,

I know this has been asked 100 times, but I thought I would ask again since materials are always changing. Does anyone know how the feel compares between the medi 95, juzo, and jobst, sleeves? And any other for that matter. I currently wear a low compression off the shelf juzo soft/dream but I would like to consider other options before re-ordering.

Thanks ahead of time for any help you can provide!

Kicks · January 2014

I have low compression Juzo custom sleeves and gloves and like them.

carol57 · January 2014

pkeiles, that is such a good question! It's incredibly difficult to find samples of more than about two or three brands/types in one place to actually feel and try on. We need a bunch of garment jamborees to take place in ten places in this big country, where all the vendors show up and show-and-tell.

We can dream, right?

mnmbeck · January 2014

Ever since I found about brightlifedirect.org, I've been been ordering and trying on several garments. I was doing this at a local store, but it seemed like such a pain. I figured I'd just do it on my own. Plus, brightlife is so much cheaper. I know insurance will pay for one, but I will want another one anyway. I think I will have 4 or 5 different ones that I've tried on (sleeves) and 5 or so gauntlets. So far, I've tried 2 sleeves. The first was Allegro, and the fit wasn't right for me, and I seemed to react to it. The second is a Jobst Bella Lite (RTW). It feels MUCH softer, seems to fit better, and so far I haven't reacted to it! I think I have a Sigvaris and one other (can't remember which) on order. So far, I have only tried an Allegro gauntlet. It's OK, but it's not going to work. Thumb is too long and tight.

Anyway...the company sure has been great about letting me order and send things back, as long as it is within 30 days. I am hoping to find a combo that I like!

hugz4u · March 2014

Any one see the new LYMPHDUDES by lymphdivas for men. I am excited for our lympher boys! They now have products. Saw it on the lymphedemaproducts website.

All things gloves/gauntlets/sleeves

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