Thank you - and some questions

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mcgis
mcgis Member Posts: 291
edited June 2014 in Lymphedema

Just a quick thank you to all of you who have been answering my numerous questions about lymphedema. I'm very uncomfortable with it and it certainly doesn't fit my lifestyle so it's been very hard for me to wrap my head around the whole thing (an hour each night: exercises, manual drainage and arm pump), exercises and manual drainage before I get out of bed each day, wearing a food prep type glove over my compression glove when cooking, washing my hands....

I've asked before and didn't see any replies but have any of you gone from both glove and sleeve to just one or the other? Our Aunt is down to just the sleeve. I'm waiting for my custom glove authorization from my insurance so my CLT hopes that will help more with the hand swelling. Have any of you gotten the swelling down to match your other arm and are just wearing the garments so it doesn't swell, or when you are doing activities? I suppose I'm just looking for hope

What are your thoughts/experience with LymphDivas sleeves? I'd like to order some so I have more and ones that are fun.

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    I haven't gone from using both sleeve and glove to just sleeve (my problem area is elbow) as standard practice.  I do take glove off when cooking and a few other things for a short while.  If I leave it off too long - hand will start swelling some which it normally isn't at all (well except with the wrong compression level).  I do occasionally go sans garments if going somewhere 'special' - Christmas parties/etc.

    I basically always have either my day garments or night garments on to keep it under control.  Which I do succeed in quite well the vast majority of times.  'Living' is doing 'activities' at least to my thinking and how I live so I don't see a difference.

    It is possible that the first custom glove you get may not be 'perfect'.  It took us 2 yrs before my gloves were great.  Don't know the reasons that OTS gloves don't fit you right so it might be a real easy 'fix' for you but my problem is that my fingers are somewhat 'webbed' -  so OTS cut (yes literally cut) into the webbing painfully and making open sores.  

    Can't say anything about the 'fun' LymphDiva garments.  From what I've seen - the compression level AND custom are not available.                      

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Im afraid I havent managed to get my arm smaller since this LE started (shortly after rads), and in fact it has progressed.  My problem is elbow as well. To start with it was upper arm, then for some crazy reason it seemed to go to my elbow and is very difficult to deal with as in getting the swelling down. I find it really helps by elevating on a pillow at night. I don't find Im having any more episodes with aching and pain than before so thats good. I only have very minor swelling sometimes just below the wrist. I do confess to temporarily taking the glove off when doing something messy in the kitchen. Sometimes for gardening I swap out my glove for an old gauntlet with snug garden gloves over the top. I do this when I need to "feel things" like getting small weeds, other times bulkier gloves suffice. 

    Hang in there mc, and some of us do better and some not. Of course we all hope. LE is a life changing event. Period. Those who havent got it are clueless to how much this thing forces us to change our lifestyles. Nor do they have a clue how much time it all takes. Even our fellow BC sufferers who dont have LE can be pretty clueless about all this.  Its enough that we got BC, but LE too? (UGH)

    I pretty much dont care what others think as far as looks go. It is what it is, but thats me. My gloves and sleeves have a job to do and thats about it. I don't mind answering questions and I'm pleasant to all except those who say dumb things on purpose. Im not familiar with LymphDivas.

    Kicks those webs causing those sorts of issues must be awful! ( Huggsss)

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  • carol57
    carol57 Member Posts: 3,567
    edited January 2014

    A thought on Lymphedivas is that I find them to provide proper and comfortable compression. In my kayaking weeks I bring lots of sleeves to have clean ones each morning. I find the Lymphedivas sleeves dry much faster than my Jobsts or Juzos after the inevitable dunking, and they're more comfortable when I sweat a lot during exercise, for the same quick-dry reason.  It's true they don't have custom sizes, but I saw an ad in the NLN's Lymph Notes magazine for an iPhone/ipad app called a 'fitter's aid.' The ad says that the fitter's aid will help determine which size is best when an arm is between sizes. I have not explored the app so cannot say if it's easy to use or even possible for us to use when measuring ourselves. But it might be worth investigating if anyone has been interested in the Divas sleeves but doesn't fit in standard sizes.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2014

    My arm sweats too much to regularly wear Jobst or Juzo sleeve/glove (had an infection develop because of that). Have not tried the LympheDiva products.

    What has helped the most in the past few months is daily use of the Flexi-Touch pump. Hand swelling is down to the point that I could almost get a ring on, but I won't attempt it. Even my therapist remarked last month when I went in for documentation of results that my finger volume was down. Had to get insurance prior authorization: once approved I got the machine right away, then they refused to pay! The manufacturer, Tactile Systems, is battling this denial of benefits for me.

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