ALL THINGS Gloves and sleeves
Comments
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Any other suggestions?
LindaWe are all different, but if your LEist seems to think you almost could have gotten away with an Isotoner, I strongly suggest a Farrow glove for you. The blk one looks nice., The feel is silky and very very thin. It keeps my hand under excellent control.
It is $86 atwww.brightlifedirect.com and my INS covers 80%.
I really think you will find the 'least cumbersome' of all gloves.
Good Luck with your decision- these garments are not cheap for trial and error !
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Linda, sorry to hear that you are stuck in the wrap and bandage routine. Till I finally got a good glove which took almost 3 months, I was also bandaging my hand. I am a righty and that's my LE hand so it was a royal pain in the neck. Now I only wrap at night. I really get what you have to deal with. When you finally get a well-fitting glove (ask your therapist about Farrow), it is so much easier. I also use the Active Imak, at home, when I want to do kitchen work or just so for a change. It's not as good as a real compression glove but pretty close. The Isotoner didn't work for me at all, because the fingers were too big.
Hope that you get your glove soon. Do look at the Active Imak. It might help you in the meantime.
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Hey ladies - I finally managed to wear ALL my jovipak night garments on for 6 hours. I think the sleeping pill helped. no anxiety.
- When I went to LE therapist last week my left arm was down and my right arm was up but at least something was down. I keep telling myself that is progress 
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Good job Gma!!!!
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Linda-n3, as someone with hand swelling, I empathize: hands are hard.
Personally, I have a closet full of very expensive products that didn't work for my hand: jovipak, Tribute and the Solaris Readywrap--the arm fit, but the gauntlet did not fit when either a finger wrap or glove were worn under it.
I do have a new larger size readywrap gauntlet to try, but haven't yet.
Personally, I wrap at night and wear a custom glove that is "opera length" during the day--as needed. I tried a lot of gloves also, before I found what works for me.
I took the CLT course and we were given Caresia sleeves to try, and I actually found that the sleeve that has a thumb opening and allows me to gauze wrap my fingers underneath, and put 2 short stretches over, works pretty good for the days I'm sick of wrapping. It's the Caresia from MCPs to axilla. It is bulky, but it works for me.
http://www.brightlifedirect.com/caresia-arm-liner-mcps-axilla.asp
When I was hospitalized for my hysterectomy 2 weeks ago, my gyn oncologist got me permission to wrap, and I wanted them to be able to cut it off it there was an emergency, so I padded the hand with older gray foam and used three bandages, and it worked very well.
Hands are really, really hard--so many variables, and an arm is simple cylinder (mainly) where a hand is flat, and often unless there is padding on the top/bottom, most of the pressure goes to the sides--it's called the "Law of LaPlace"
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My LE-therapist just measured me again, all of my upper arm measurements are way down, but my lower arm, mainly wrist and hand are slightly up - have any of you had that happen before? She recommended continuing to do MLD and wear my garments, as I have been, and see if they go down too.
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just wanted to share a posting on lymphedimvas which I found on my favorite website, boingboing.net - a kind of geeky current events, maker, science fiction, what have you website.
http://boingboing.net/2013/05/28/r-stevens-of-diesel-sweetie.html#more-232740
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I have found that I can go without my glove during the day (Elvarex) after experimenting...but now that I have a new sleeve (same brand/size but not stretched out) it is pushing fluid into my hand after a few hours. Anyone have this happen? Advice?
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I've had that problem Mamacath - I had to go to a one piece custom. It helped quite a bit, I still have some problems, but mostly because I also am dealing with joint degeneration in my thumb which is also causing more swelling in my hand. So, I try to do my MLD, wear a night garment, JoviPak sleeve, and a one piece, custom sleeve, mine is a Juzo.
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Found the missing gauntlet in action.
I washed my gym bag and found it in the washer along with one earing (other one got gobbled up and a beaded necklace. Now what did that take?.... 2 months ,I think. See... I just stopped looking for it and it showed up. Decided not to sweat the small stuff. Well it might have been big stuff if I only owned 1 gauntlet but I had my other juzo gauntlet waiting on the sideline.I am going to try and wear them more instead of the horrid glove. Well my LEist says to wear the glove in the first part of the day and then switch towards the early evening. Going to try that out now that I have 2 gauntlets.
Crossing my fingers that I don't cause a swell problem with my gauntlet experiment.0 -
Hugz, you will sleep well tonight knowing where that little bugger has been all this time. Wow! And we all thought it was gone for good!
Keep us posted on the Great Gauntlet Experiment!
Hugs,
Binney0 -
(same brand/size but not stretched out)
Mamacath
Is the sleeeve too tight?
This may not be good ' official' advice so think it over, but you might want to consider stretching the sleeve ( a little) over a jar of spaghetti sauce or something like that . You may run the risk of loosening it too much, so do be careful.You do wear a gauntlet when not wearing a glove , right ? You do need some hand protection whenever you are wearing a sleeve.
Good Luck.
Hugz
YAY!
Your mysetery is solved ! ( now for mine- I plan to post about the return of this rash on the grrrr thread :>( Also- I think the pup made you lose 2 pounds too ... you are now doing the happy dance that our furkidz make us do.0 -
Hugz, I guess my missing watch was not in that gym bag? Please take another look!
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check that gym bag please...my mother's cameo ring is gone and if I tell my sister she will hit me!
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One more gauntlet and I will have my sporty set of juzo dreamsleeve/gauntlet in Azure OOO - I like the color and LE therapist checked the sleeves I received yesterday and said they are good :-)
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I like the Juzo dreamsleeve the best. I try to coordinate the colors with my outfits and wear the flesh-colored one in more sheer clothing so it doesn't show as much. These are very comfortable. I machine wash and dry them with my regular laundry and they are staying in good shape. I also like the lymphedivas sleeves with the crystals for when I want to sparkle. I actually wear them on both arms sometimes so it disguises the whole thing and looks like an intentional look when I've gone out to night clubs. I don't love the lymphedivas gauntlet. My lymphediva products aren't holding up as well as the Juzo. But they are nice when you want the designs.
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mamacath - Part of the hand swelling problem was because of double compression at the wrist, and even though they claim that at the wrist compression is adjusted so that the sleeve/gauntlet (or glove) combination is correct, I couldn't get it to work. With the custome two piece I even had them made looser at the wrist and it still caused hand swelling. I found a great fitter in Portland Oregon, and she adjusts the measurements so that there is less compression over my bad thumb (more compression causes more pain and swelling), she measures a little big at the wrist so that things can move up the arm better. Boy, I'm not explaining this well, but what she does in her measuring for the one piece has worked move lymph up. I do have to be careful to keep my wrist in a neutral position too, or I get more hand swelling. I guess I'm over sensitve in the wrist area
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Sorry girls............ no rings or watches found with my gauntlet
I am sure they will turn up some where. Could be one or two years of waiting though.......0 -
Reading a lot and learning. Frustrated that new adjustable garment not working properly, hope LE therapist can help me tomorrow. Am back in bandages after each try with the garment - first with an Isotoner glove (with her blessing), more hand swelling, back to bandages; then with hand wrapped, still swelling of hand & fingers; back to bandages; couple other adjustments, still problems, back to bandages. Got the garment on Thursday, so over holiday weekend I just did the best I could, called LE therapist first thing Tuesday, so she said I could get glove, but having trouble getting anyone to call back and get the darned thing ordered - apparently need more measurements than on my record. Have only been at this about 3 weeks and seriously not sure I can continue with all the time involved in taking care of this arm that won't let me do my art or music or ANYTHING (OK, yes typing a little - this has taken 20 minutes so far). Me: complaining and whining and frustrated.
Me: trying to be loving and optimistic, met with my Bible study group this morning, had challenging discussion; dear siblings coming to plant my garden for me - one driving over 18 hours to get here! So I am filled with gratitude and love.
And I will keep doing the trial-and-error thing, trying not to let the frustrations overshadow the good things each day. LindaKR, I think your wrist sensitivity may be similar to what I am having trouble with, so will talk to therapist about that. Thanks!0 -
Frustrated that new adjustable garment not working properly
Linda3
Dont give up!
Why can't you get a ' regular' day sleeve ( Like a JUZO or even a Lymphediva) see www.brightlifedirect.com to see what I am referring to . MUST you have this ' adjustable ' one ?
Keep calling, keep trying, be persistent, and above all else - dont give up.Once you get the best fit, you'll get the best function.
Hang in there !
((Hugs))
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Thanks LindaKR and all-I get what you are saying. It is a wrist thing for me too...when the wrist is too tight, the hand swells up. It is tricky trying to figure this out! Love my sleeve fitter-especially happy when she measured me 1cm smaller than last fall!! Happy Day!!
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Purple, I am still actively decompressing, using bandages and the adjustable garment was supposed to be a substitute for bandaging so that I can do it on my own. I am right-handed, so having LE in right arm is more than challenging for me, so DH has been VERY good at the bandaging. But he is often away, on call, out of town, etc., and if I have an issue I just cannot manage to do the bandages myself, so we thought this adjustable garment would be great. Maybe I am just still too new at this and will get better with it. I am looking forward to being able to just wear a day sleeve, just not there yet.
My first thoughts were that I would be very very very compliant and aggressive and get this under control so that I will not have to actually wear a sleeve all the time, as it seems there are many women who are able to do this. But as this continues, progress is slow, my therapist now tells me that my presentation was NOT MILD, and she thinks I will be needing to wear a sleeve every day for the rest of my life, so it is really tough getting my head around this idea of another new chronic disease on top of the cancer chronic disease. So I am trying to develop a "fun" attitude" about it - am thinking about getting one of those lymphadiva sleeves with tattoos on them for next time I see my mother. She is SO against ink of any kind, and nearly had heart failure when all of the grandkids put on temporary tattoos at the beach a few years ago.... maybe a whole arm tattoo would stroke her out, so maybe I should re-think that ... but it was sure funny to see her face with the kids!!!! (she is a bit of a prankster herself, so it might be good fun). In any case, I am trying to change my attitude and expectations.
I did have a trial with the FlexiTouch pump yesterday, and measurements went down at wrist and forearm a lot, upper arm a little after the one hour demo. The rep told me it takes about 3 weeks to get it approved through insurance (IF it is approved - apparently only about 60% are approved) and then to get it and get the training. Anyone have experience with this? I am trying so hard to keep the fluid moving so that it doesn't have a chance to get fibrosis, and it seems a 3 week delay will just increase chances of fibrosis setting in.
As you have said on this thread before, LE is a steep learning curve. I would rather be learning about something else, personally, but am so grateful for all of you who help us newbies by sharing your knowledge and experience.0 -
"I would rather be learning about something else..."
Oh, Linda, you said a mouthful!
I'm so sorry about all the contortions and grief involved in this rotten diagnosis. It's hard to make room in our lives for this, but it's possible, and you're doing really wonderfully! (But then, judging by your tag-line about gratitude, joy, and prayer, maybe that's not so surprising). Give yourself plenty of room.I have the kind of sleeve you do, and I don't find it a very good substitute for wrapping unless I catch a flare early. For initial therapy it would not have worked for me at all. I needed to wrap. There is little that's more important to on-going self care than being able to wrap yourself, so even though it's a bit like climbing Mt. Everest, the view from the top is empowering. Practice--even through the tears and the thrown bandages--and you'll be incredibly proud of your accomplishment and confidant of your ability to care for yourself. By way of encouragement--and maybe challenge
--I have bilateral LE and sometimes have to wrap both arms myself. I start with the right because I'm right-handed, and then I wrap the left arm using my already-wrapped right hand. I'm incredibly glad that I stuck with it and learned to do it, and you can too!The Flexi is generally considered the best pump out there, and it has the most research results, so if you're interested in a pump that's the one to go with. But you need to know that a pump is NOT a substitute for either professional therapy or wrapping. It is only a substitude for self-MLD at home (which you also need to know how to do and be good at, so you will always have that skill available even when the pump is not). All that just to say that a three-week wait is not a problem, because you will be doing your own self-massage during that time so you won't lose any ground. Drawbacks to a pump are that it's bulky to use and to store between uses, and it takes a full hour of your day, during which it's hard (impossible) to do anything else (except maybe watch TV). So before pursuing that you need to be sure you can make time for that in your life. Self-MLD can take an hour, too, but it can also take as little as 15 minutes, and it's portable, while a pump ties you down to one place. Advantages are it's always consistent in timing and compression, so even when you're stressed or feeling rushed it continues to deliver the slow, gentle technique. And in your case, it's certainly effective.
Hang tough! Hugs and prayers,
Binney0 -
Purple, I am still actively decompressing, using bandages and the adjustable garment was supposed to be a substitute for bandaging so that I can do it on my own...
I'm sorry Linda 3 - I did NOT realize that.As for 'wrapping your head' around it all, I think that may be one of the toughest things. I sure hate to muddy the waters as you are trying to do that, but I feel compelled to say that some woman do start out wearing sleeves 7 days a week and after losing weight or doing this, that or the other, there have been *some* women who, over time, have been able to get down to wearing them strictly for exercise/exertion. Just sayin'.
DO consider a lymphediva. I had great fun modeling for them. I am the one on the ' spring patterns' with black top and peacock sleeve.
Good luck getting all this straightened out.0 -
Binney and Purple, you are both wonderful! Thanks so much for your suggestions and encouragement. I often wonder if I am actually doing the MLD correctly and I am pretty sure I don't get enough time in. I tend to be a slightly restless, start something, get detoured, do something else, come back to first thing, etc.,, so start MLD, have to go get a drink, back to MLD, cat wants out .... etc. Easily distractable. I also get severe cramps in my hands, so can only do a few minutes before I am having cramps and agony from that, so I quit for a while. So I am not sure I am all that effective, although I can demonstrate the appropriate technique to the therapist. I think the pump would work well for me in that I have no problem parking myself in front of the TV or video, and in fact, it takes me at least an hour to get out of bed in the mornings and I go to bed and watch TV for an hour or 2 at night - still having lots of problems with fatigue. It takes me all day to just get up, get dressed, get a walk in, take a nap, get up, have dinner with DH, go to bed. Sometimes I get a few fun things in and go out for a class or lunch, miss my nap and am wiped out for another day, but all in all, doing much better with that than I was last year at this time. What I guess I am saying is that I already have a nearly full-time job just surviving each day, and this is even more difficult, but if I can get some help with the self-MLD, that would be great. The rep said only about 60 percent of them get approved by my insurance company, though, so I am not holding my breath!
Frustrating moments: having my siblings here to put in my new garden, not being able to get in there with pruners and yanking out weeds. Golden moments: my loving siblings putting plants where I told them, watering them in, celebrating the creation of my beautiful new garden with loved ones. Yes, I CAN DO THIS, with a little help from my friends! (gee, sounds like a good song....)0 -
Linda, what a beautiful post--thank you! Hugs all around for your loving family. And I can't think of anything more healing than a garden. Flourish and be well!
Okay, praying with you for a Flexi,
Binney0 -
Weeks ago, I solicited the group's wisdom about how to wash my day sleeve & glove while traveling to a place with grossly polluted water. While not crystal clear, the water wasn't horribly brown so I didn't filter it. The first few days, I washed my garments in boiled & UV light-treated water, but after a few days I washed the garments in tap water, and just used treated water for rinsing them. All in all, it worked out very well ... by the end of the 2 week trip, my garments looked pretty gnarly and did not smell very good, but no cellulitis or skin breakdown!
My LE was very well behaved despite an extremely long flight, eating restaurant food (i.e., salt), not doing self-MLD most nights (too jet-lagged and busy), increasingly stretched out garments (machine washing and drying really matters!) and hot/humid weather. My trunk LE was actually better than it has been for at least a year and a half. In fact, after a couple of days, I only wore a light compression athletic shirt. I have two theories as to why. The first is that I was typing less than normal. The second is that the head of the bed was somewhat raised. Anyone ever notice a correlation between either and trunk LE symptoms? KS1
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but no cellulitis or skin breakdown!
My LE was very well behaved despite an extremely long flight, eating restaurant food (i.e., salt), not doing self-MLD most nights (too jet-lagged and busy), increasingly stretched out garments (machine washing and drying really matters!) and hot/humid weather. My trunk LE was actually better than it has been for at least a year and a half.
YAY, KS1 !!!!!
Soooo glad you made it thru this okay- but ' better than okay?" Now thats a bonus. I do notice lots of typing will bother my hand, but the truncal ? I do wonder about the head of the bed being raised. It may have helped. Hey, I say whatever you did- keep doing it!
This strongly encourages me because I have a little vaca planned just 3 weeks away, and I was actually thinking I might cancel due to my LE and some other pesky issues. If you can go through that type of experience/water and come out unscathed, I think I can take my chances.So glad things worked out.
I hope you will consider experimenting with setting your bed up that way etc ..to help your own truncal LE- hey, and possibly ours !
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KS1, what a celebration that you dodged so many potential potholes in the LE road! On the elevated bed, you might be onto something there. I have a friend with leg LE after surgery for melanoma, and she's been managing it for years. She elevated the foot of her bed and is quite confident that it helps keep her swelling down.
I hope that in addition to not triggering any LE nasties, you had an amazing trip that made all the LE anxiety worthwhile. (And now with your filter bottle and gear, you are so very prepared for a weather disaster! Or one heckuva a primitive camping trip!)
Carol
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Who is this monster in my bed!!! - between CPAP and Night Garment - I managed 5 hours with both last night. Does anyone have any rebound swelling when you take the night garments off??
On the other hand, I have no issues with my new sleeves. In fact - My muffin top, as my LE therapist likes to call it, is down.
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