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GRRRRRRRRR I HATE LE..........

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Comments

  • purple32
    purple32 Member Posts: 1,767
    edited December 2012

    Dawne

    I cant tell you how many young ppl have commented on my IMAK  ( otc) gloves :"  Hey those are cool - where did you get that ?"  At first I thought maybe I was being mocked in some way Surprised but I'm telling  you, people actually like them.

    Then , I was at a meeting one day in the Lymphediva onyx crystal sleeve, which could be seen , with a gray glove and my earrings etc .. match the sleeve.   After the meeting someone asked where I got it, as though they were going to order one ! What a HOOT!
    I just replied : " Oh, it's medically prescribed!"

    For someone who was SO ' afraid' of the sleeves and gloves, I have actually gotten into matching the colors and patterns ( thanks again Lymphedivas) with my outfits and even my husband swears I *prefer* wearing a  sleeve .

    Well, maybe now, but I might not be so fashion-fun devil may care when I am wearing a glove in 90 degree weather!  :>)

    We'll see.

  • purple32
    purple32 Member Posts: 1,767
    edited December 2012

    FYI, I bought a Farrow glove and asked Brightlife if I could keep it and order the next size up and then send one back.


    I dont think the issue has been with Brightlife.

  • sandcastle
    sandcastle Member Posts: 289
    edited December 2012

    I just LOVE Lymphadivis's!!! All of my gauntlet's come from them.....they are so very helpful...GREAT....customer service....Liz

  • Cindyl
    Cindyl Member Posts: 498
    edited December 2012

    So jealous.  Lymphadiva's stuff just doesn't fit me.  I need custom sleeves.  I've tried a couple and my arms are just too short and fat. Cry  Has anyone tried tie dyeing a plain beige sleeve?

  • binney4
    binney4 Member Posts: 1,466
    edited December 2012

    Cindy, Juzo offers tie-dyed over-the-counter that come in several size options, including length and width variations. Lots of colors too. They're here:
    http://www.brightlifedirect.com/BRAND-Juzo-Amsleeves/Gloves/c354_142_240/p4297/Juzo-Soft-Tie-Dye-Armsleeve-20-30mmHg---2001CGtd/product_info.html

    Let us know if you try them and find a good fit. Be well!
    Binney

  • Cindyl
    Cindyl Member Posts: 498
    edited December 2012

    Binney - cool! Very pretty.  I'll have to look at my numbers to see if one of their sizes will fit. 

  • LindaKR
    LindaKR Member Posts: 1,304
    edited December 2012

    Cindy1 - I order custom Juzo and they come in several colors - violet, fuschia, navy, light blue, red-ish, a rich brown color, grey, black, beige, and their may be another color not sure - I get Juzo expert, they have some cotton in them and I seldom get sweaty in it, very comfortable.  I would suggest having an experienced fitter measure you for your first one though.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited December 2012

    Here's the link -

    http://www.juzousa.com/Product.aspx?menu1=Lymphedema Garments&menu2=Sleeves&product_class=SG&group_model=3020

  • purple32
    purple32 Member Posts: 1,767
    edited December 2012

    I have to say, I love that tie dye sleeve.

    I did ask my fitter to order one because I wanted to try the long length ( I guess she forgot about that as well!)  Anyhow, it appears as though they come in sets WITH the gauntlet . Does anybody know if they just come as a sleeve only option so I can just put a glove with it?

      I wonder about trying a gauntlet...may not be too wise with my finger swelling.

  • Kay_G
    Kay_G Member Posts: 1,914
    edited January 2013

    Purple, I have never had finger swelling, only hand and arm, but my LE T insists I always wear a glove with the sleeve to keep the swelling from going into my fingers. He said the fingers are even harder than the hand to correct if the swelling gets there. He won't let me try a gauntlet. I don't think you should try a gauntlet, it could force the swelling into the fingers or prevent it from moving out. At least that is my understanding.

  • Cindyl
    Cindyl Member Posts: 498
    edited January 2013

    Yeah, purple, my understanding is that gauntlets are only indicated for people with no finger/hand involvement. My LE tech said if my hand ever started puffing she'd want me to switch to a glove full time. 

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    I had gauntlets at first, my LE was pretty much truncal and arm a little to the hand, end of thumb to wrist, then it moved out to my knuckles, then fingers - my LE-T has wanted me to get a one piece with glove custom for the last year +, but have heard such bad things, and the fitters do not like fitting them as usually clients aren't happy.  Last year I went to the one-piece with gauntlet which was great until October, then...... my fingers and knuckles starte  I'm glad I had the one-piece gauntlet to start it was a good in between - the one piece with glove is a little challenging, but is working wonderfully and very comfortable, it's working with my fingers and knucklesl!! Now I won't go back to the two piece, or gauntlet! 

  • purple32
    purple32 Member Posts: 1,767
    edited January 2013

    Thanks Cindy and LKay

    I hate the thought of wearing gloves inside in the summer, and I just love the gauntlets, but common sense tells me you are right.  HTH did that get in my hand?!
    (GRRRRRR...LE!  :>)

  • LindaKR
    LindaKR Member Posts: 1,304
    edited January 2013

    I should have listened to her before now - bad me Embarassed

  • carol57
    carol57 Member Posts: 1,550
    edited January 2013

    Gosh, I'm in a gauntlet, and I sure hope I never need to graduate to a glove!

    Today DH and I walked in the rain, following Hugz' example that rain should not be an impediment!  Mile total for the day is 7.9, and we'll be walking to dinner and then some New Year's Eve strolling, so maybe we'll round up to ten.  Tomorrow, we head home, and that means...sigh...the real world of work and home duties, and not enough time to take long walks!

    Happy New Year to all.  Looking forward to exercising with all you in the new year!

    Carol

  • binney4
    binney4 Member Posts: 1,466
    edited January 2013

    Purple, the link I posted above to Brightlife's tie-dye page specifies that the sleeves are sold separately from the gauntlets (which are solid colors, not tie-dye). Definitely can order it alone and wear a glove with it.

    Carol, sounds like a beautiful end to the old year and prelude to 2013! Happy New Year to all!
    Binney

  • hugz4u
    hugz4u Member Posts: 1,818
    edited January 2013

    I have the dolphin color of the tye dye Juzo sleeve. It fits me a wee bit tighter than the same one in beige. It could be the dye processing once again. The matching gauntlet appears extra short and I have to keep pulling at it .In the end I don't use the gauntlet. I have a lymphediva gauntlet that I wear on special occasions so that I am not in the "gross glove" which I wear daily. I don't have much hand swelling but want to be proactive.



    I wore my tye dye to the office and one gal just kept staring at it. I felt like she was thinking that maybe my sleeve went thru a bleach cycle, so I haven't worn it to work since. What would be really acceptable is if I wore a matching one, then it would just look like a tye dye long sleeve tee. I wish they would make a compressionless other sleeve.



    I just wish I could " get over it" or "stop being so vain" but I just can't get use to the staring of people seeing the medical sleeve thing. The other day a acquaintance kept pressing me for an explanation on my arm in public and I just kept saying that it was an injury until I changed the subject. Grrrrr.

    Check out my review on all things gloves and sleeves thread. Viewed a waterproof sports glove at REI store.
  • dassi52
    dassi52 Member Posts: 152
    edited January 2013

    I know how you feel, Hugz, about curious people. When I was still in gauze wrap (just the hand and a drop lower forearm, the guy who opens the gate at the garage wanted to know what happened, and that's besides the zillion others in supermarkets etc. I usually give a super simplified explanation, not bothering with the LE word, unless it's someone who I know has had BC. Curiosity comes with the territory. I always get questions how my hand is, any better etc, and I usually answer relating to my finger flexing issues only, which are improving very slowly. Go and explain LE. Sometimes I say, that while the fingers are definitely improving, the swelling is here to say in the meantime. These answers seem to satisfy them, they are true but most importantly let me off the hook quickly. Your collegue at work will get used to it eventually. Don't let it bother you.

  • BeckySharp
    BeckySharp Member Posts: 465
    edited January 2013

    I have never had LE in hand but my therapist kept me in a glove for a year to make sure it did not move to my hand. Now I wear a gauntlet most of the time except when I exercise. I still wear a glove then since my fingers always would swell with edema before bc with exercise. I will do anything to prevent LE from getting to my hand!

  • purple32
    purple32 Member Posts: 1,767
    edited January 2013

    That's great, Binney.  Thank you !  I was just admiring the pictures with the matching gauntlets.

    Becky

    Werent you lucky yo have  a therapist who caught that and had you wear the glove as a preventive measure ? I never heard of that. I had NO CLUE I had LE in my arm or hand ( I "knew" about the breast/truncal but the med prof. said no way) until Oct. 2012. One day I somehow realized my wedding band felt tight. I went to take it off , and it wouldnt budge.

    The rest is history.

    Happy 2013 to all - another chance to get it right!

  • purple32
    purple32 Member Posts: 1,767
    edited January 2013

     "I wish they would make a compressionless other sleeve.

    I just wish I could " get over it" or "stop being so vain" but I just can't get use to the staring of people seeing the medical sleeve thing. The other day a acquaintance kept pressing me for an explanation on my arm in public and I just kept saying that it was an injury until I changed the subject."

    Hugz

    I think a compressionless "match" would be a great idea. I too have thought that way! Who knows, maybe Josh from Lymphedivas is lurking and will give it consideration.  I actually have a blk shirt with crystals that darn near matches one of their sleeves!

    As for the " being vain" thing  - At first, I felt as you do, but I have stopped beating myself up over it. This is not a simple issue of being vain. SO much more goes along with it.

    First of all, I am ( was ?) a stylish woman.  Is that a crime?  Why would I want a health issue to rob me of that ? Why would that make me happy? Am I vain ( bad) to want to feel attractive ? No. I dont think so, but the second piece to all of this is privacy.  I planned for nobody to ever know about my cancer for too many reasons to list here and bore all of you with. Suffice it to say there are HIPPA laws for a reason. It is almost as if someone <someTHING> has violated us and stripped us of those privacy rights. Should that make me happy?  It doesn't. We are literally wearing our hearts on our sleeves.

    I can still count on one hand the ppl I have told this too, as I flaunt my Lymphediva crystal sleeves at work and  talk about making a DVD exposing myself to anyone and everyone! But you see, that would be in my time and at my choosing and for a good cause.


    I have had ppl ask me how my hand is . I very nicely say, " Fine, thanks".

    People ask me about the sleeve and I say :" Oh, it's medically prescribed."  Someone did say " For what ?" and I answered :

    " Why ?"

    Now that might sound mean, but that is not my intent.  I do not care to get into a  big " lie story" ,& I do not care to tell them about my LE either.  If they answered : " Because I  am afraid I might have LE or 'I know someone with that and they have LE "or something along those lines, I might understand better and explain , but to satisfy someone else's curiosity at the expense of my dignity ?  That's what it feels like TO ME, and I will not do that.  Cancer and LE did take some things from me, but I will not let an individual take away my right to privacy  for their own titillation.  Hmmmm... no pun intended there.

    My beautiful 2 1/2  yr old grand daughter is <part> Latina .  I have had certain people ask  when they see her picture:" What is she ?"  I resent that.  No, I do NOT think they are asking without a certain prejudice!  ( I know the ppl - you'll have to trust me)  I always say : " WHY?"  They stammer. There is no good reason why they want to know except to pass judgment.  I won't allow that.


    My little 2 yr old  darling was dancing around to Christmas music the other day, and she just grabbed my sleeved arm and gloved  hand to join her.  She has never asked me what it is. She has never stared or balked at it in any way. Later, she collapsed into my arms, tired, and I held her and smelled the sweetness of her hair as I stroked her back over and over and thought about her innocence.

    My husband took a candid shot, and when I saw it, I was almost stunned to see this little thing on me being loved and hugged by this dark gloved hand.  It was okay .

    Wear your juzo and if anybody asks about it  just say ; "Why ?"  If they say they want one : " Sorry- it was medically prescribed."

  • Cindyl
    Cindyl Member Posts: 498
    edited January 2013

    I don't think it's vain AT ALL to want pretty things. I'm very into colors, the brighter the better. I'd never choose to wear anything in nasty "medical beige." Quite aside from colors, I feel better, more confident, if I look "pulled together"  I've been wearing lots of blazers and jackets to cover up my sleeve and to balance my look (as much as I can with a lop sided chest) but, I'd love matching other sleeves, may try the tights "sleeve covers" for both arms... and that's all well and good in the winter time, but I dread another summer of hot flash hell with layers...

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited January 2013

    HAPPY NEW YEAR to all my wonderful ladies. Hugs.

  • dassi52
    dassi52 Member Posts: 152
    edited January 2013

    I absolutely agree with all of you. There's a matter of privacy. Very few people know I had BC, and even fewer know I had it twice. (In fact, when I chose a hospital for the BC surgery I picked one that was far from my home - there's one very close and there are always people there that I know) And keeping it private is exactly what I want. Of course we want to look put together and nice. Aren't we women? And nobody in his right mind wants to walk around with a billboard saying they have LE what the glove and sleeve are in a way. Besides all that, there is a lack of comfort, not just in the summer but all year round. 

    I really think Lymphediva is doing a great service. I wish other companies would follow suit. Maybe they could just make a "cover-up" sleeve and glove w/o compression that go on over the garments but are fashionable. All this compression stuff is sensible like old ladies shoes etc, but if you wanted that you could always wear sneakers. We don't have a choice and we know that it is most likely we'll be stuck with it for the rest of our lives. That's probably the worst part of it. OK I griped in agreement with all of you. 

  • binney4
    binney4 Member Posts: 1,466
    edited January 2013

    Dassi, WarriorWear makes non-compressive oversleeves you can wear on either arm:
    http://www.warriorwear4u.com/

    There's another company too, but I can't remember the name. I'll see if I can find them.

    With any oversleeve (even one you make yourself from tights) be sure it is not adding compression to your arm or hand, or any twisting or wrinkling that could create blockage. Best to have your therapist check out the fit.Smile

    Be well!
    Binney

    Edited to add: the other company is SassySleeve:
    www.mysassysleeve.com

  • hugz4u
    hugz4u Member Posts: 1,818
    edited January 2013

    Purple, Read your post and you are so dead on! The rest of you girls also do "get it" and that is why I am on the threads. It is here where we get support and validation. I thank each and every one of you many times. I value all your thoughts and feelings.

    I really do think most of us, me included need an assigned counsellor who follows us periodically when we first get diagnosed with BC, and LE because all this medical assault can really leave you a bit twisted and I consider myself pretty sound in mind!
  • Cindyl
    Cindyl Member Posts: 498
    edited January 2013

    The sassy sleeve site apparently doesn't sell direct. Here is a place you can order the Sassy sleeve online... http://www.lymphedemaproducts.com/products/mysassysleeve-decorative-sleeve.html

  • purple32
    purple32 Member Posts: 1,767
    edited January 2013

     "I consider myself pretty sound in mind!"

    We DO get it hugz,
    And I was doing pretty "sound" myself until my 4th or 5th illness hit  :>)  LOL

    The counseling idea if a good one, but can be a  challenge ( somewhat similar to going to a PT for LE tx) . I went to a counselor who I liked and she helped me with all the cancer stuff, but as soon as I saw the LE come on , I think she thought I was a paranoid schiz** because I kept coming back and reporting the BS said NO, the first LEist said NO etc ... Finally , in a  soft voice she said :  " Maybe you should begin to accept the fact that you dont have it ."  ( Damn!)

    I went to a great cancer support group 2x ( I LOVED them when  my husband was DX) but we sat and had a  spitting contest of what was worse - having cancer or having LE!  ( WTH!)  I am not up for that debate. If you can find the RIGHT counselor - just like the right LEist and fitter... it would be ideal.  Thank goodness we have each other in the meantime!

    BINNEY
    You are  a wealth of info.  Many thanks.  I only took a quick peek at the warrior wear , but I am not 100% sure I  understand about them.  I need to take  a better look - will chk again later.thx

    IMO, I did personally did not care for the sassy sleeve. I felt they 'advertised' the BC even more- which is fine if that is the goal.

  • dassi52
    dassi52 Member Posts: 152
    edited January 2013

    Binney, thanks for the info, but as my sleeve is only for flights (and I sure hope it'll remain that way)a sleeve cover isn't necessary for me. I only mentioned it for others who do wear a sleeve. I would like a nice glove cover though. 

  • SherylB
    SherylB Member Posts: 147
    edited January 2013

    Dassi52

    I really admire you when people ask questions and you reply "why"? Go girl! For some reason I find myself going into long drawn out answers. I probably make people wish they had never asked.

    For some unknown reason I have a strong desire to tell everyone. I have seen it mentioned on these forums others wanting to tell even the checkout people. Don't know why maybe hearing myself say it makes it more real and less scary.

    take care sheryl

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