New type of LE Garment

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  • Springtime
    Springtime Member Posts: 5,355
    edited April 2011

    There's my hero, Cookie... :)

    So here's my report so far: I tried the large tummy band as a tube top. Had to cut off the top "band" because it cut in. I could wear it but it was so tight it sort of hurt my skin and my little rebuilt nipple. Today I am trying it lower on my ab just to see what it does for my mid section before cutting it up. I think I'm going to stick a piece under my Under Armour and see what happens. I don't have much issue in the breast but more trunc, side area.

    The bilateral sleeves - I am not seeing anything happen there and wonder if I should have gotten a smaller size or the acutaly compression verson (that is one sleeve). The sleeves seem really tight on my lower arms and more loose on my upper, which is where I really need more compression I think.

    Thoughts on this??  Will report back after I cut up the belly band and try it under the under armour.  

  • toomuch
    toomuch Member Posts: 901
    edited April 2011

    Spring-Since the wave isn't a compression sleeve it will ony help if it fits snug. I love the way my arms feel when I wear it but I hate the wide, tight band at the wrists. I wish it ended like a normal sleeve. You can try wearing a regular Jobst sleeve or LS underarmour over the wave and see if it helps more. I've worn it that way too when I exercise. I don't notice dramatic results but it is comfy!

    Amy

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    This doesn't help anyone but me...but that sleeve design is the only reason it fits me...every other sleeve(including the one arm) is too loose on the bottom and too tight on top.

    I have not had anything miraculous on the arms, but I have gotten slightly better( since it is better than nothing) I will say the LE MD said my skin looked good and soft. I will put the juxtafit over it when I get it.

    Oh I call the breast one my "boobie wiggle"

  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2011

    Hi, I have been trying to find a custom sleeve that won't slip or bind my inner elbow.  Just talked to Sue callison as I have ordered the black CCL2 and will give it a whirl.

    Also I put in a  word for all you girls and said you need cami's/gloves/tees if possible. She gave me a email of the person that talks directly to Soleida manufacturer and suggested that all the people that are interested in these new garments being produced to email him suggesting so.That way he can see THERE IS A NEED for these items  and  they will strongly consider manufacturing.  woo hoo!

     Also mention that Sue Callison is helping us with sleeves  as this puts in a good word for  her and cements the seriousnous of our intent. (Sue is soooooo helpful)

      I will provide the email address and name in the next few days.  Sorry , I was not able to read the recent posts and have not seen the latest on your  armcare experiences, and just sent this blurp to give you a heads up. When I have time I will try to post more often.  I truly can identify will you lovely bunch of gals.

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited April 2011

    Yikes!  For the record, both the Armcare and the bilateral Wave ARE compression sleeves and both DO have graduated compression.  The bilateral Wave sleeve was not designed to be a LE sleeve, however, it absolutely IS a graduated compression sleeve (15-21mmHg). 

    I've been wearing both the Armcare CCL2 and the bilateral Wave sleeve for a year.  (Exactly one year next week!!!)  They are the only sleeves that work for me.  I have no problem with the shape of the wrist/cuff on the Wave but I can imagine that some people might. 

    Inspired by Cookie and everyone, I just ordered an abdominal band to cut up for experiements. I need to figure out a way to wrap it around my axilla and collar bone.  Hmmmmm.

    Cookie - I am very curious about the Juxtafit.  I've never seen it in person but I have wanted to try that kind of garment - sort of a cross btw a sleeve and bandaging.  Please report back!
  • Springtime
    Springtime Member Posts: 5,355
    edited April 2011

    Thanks for the info Sleeve Ninja!!! 

    About the same time I got my wave sleeves and abdominal band, I also got a lovely new under armour T that has enough room for my boobs built in! I have been having good luck with this for my Truncal LE. Last night, I wore the bilateral sleeves and my new underarmor T to Yoga. Typically I have to be so careful with inversions, but last night I even did some down dogs  (which usually cause a flare up) and all is good! This morning I woke up and that "area" felt great! I am thinking I may not need the wave in there, but I have it if I need it... I'm going to wear this T for all exercise :)

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited April 2011
    Sleeves - I used to have big-time problems with my elbow crease (searing pain, redness, immediate increased swelling).  The Armcare is great for me - hopefully it will work for you too.  Before the Armcare, I used to tuck a smooth piece of Artiflex inside my sleeves over my elbow crease.  This helped a lot. I also used Jobst roll-on body glue to help hold my sleeves up. 

    Spring - I luvvvv to do inversions. I was v depressed by the idea of never doing them again.  I only do them with my favorite, trusted, knows-me-well yoga teacher - and we go easy.  I don't get to see her oftenCry but I feel wonderful whenever I doCool
  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    ok...I did it...I chopped off the arm of one of my silverwaves. Hopefully now I don't have to wear the extra sleeve tucked in my pants. It was giving my healthy arm, which I use more at work tendonitis .

    Lets see!

    Can we get a girl scout badge in LE

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2011

    Actually, Cookie, LE is such a huge subject that they offer several badges. Here are a few we're all working on:

    Cry - This one is "Finding a Doctor Who Will Diagnose LE"

    Surprised - This one is "Adjusting to the Idea that This is For Life"

    Embarassed - This one is "Compliance in Wearing Wraps in Public 23/7"

    Undecided - This one is "Graduating to Wearing Compression Garments"

    Money mouth - And this is "Paying for Said Compression Garments"

    Undecided - This is "Educating Our Healthcare Providers Without Decking Them"

    Cool - This is "Maintaining Arm/Chest Without Swelling"

    Yell - And here's "Coping with Yet Another Flare"

    Laughing - This is for "Advanced Brownie Eating"

    Innocent - This is "Doing MLD and Exercises Regularly"

    And finally, Kiss - "Getting On With Life, Sistah!"

    As you can see, we'll all need the extra-long badge sash to fit all of these on, and I'm sorry to say that our insurance does not provide them. No surprise there....

    Be prepared!
    Binney

  • Springtime
    Springtime Member Posts: 5,355
    edited April 2011

    Oh Cookie! YOu are a riot! We should earn a "badge"!!! all this creative cutting and sewing...

    Sleeves, I am sad about inversions too. I used to do shoulder stands and even had a "head stander" - supposedly going upside down is really good for your body. But I noticed after using the "head stander" that I would get bad flare ups. :(  I decided not to keep it. Happy thought I could at least get a few experimental Down dogs in the other night at yoga... :)  

    Binney, I love the "Educating our health care providers without decking them"!!!!!! 

  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited April 2011

    Binney,

    I was never good at earning badges in the old days - but these, I'm working on it!!!!!

    Dawn 

  • Trishia
    Trishia Member Posts: 572
    edited April 2011

    I am thinking I need to order one of these.  Is the wave the best for yoga and working out?  I would love to have some shoulder support. Inversions actually help my flare ups.  Weird, huh?  My PT says it's because of all the scar tissue and fibrosis, that when I am in down dog it actually opens the channels and allows for better flow.  I can't plank on my hands anymore though...I have use my forerams, and I can't hold them for as long.  Same thing for push ups...I have to way modifiy because my shoulder gets fatigued so easily. 

  • Estel
    Estel Member Posts: 3,353
    edited April 2011

    Trishia - I wear the silver wave with a sleeve (that is a little worn out, a little looser than normal) over the top of the silverwave.  The silverwave is a little big on me and I need a little more compression on top of it to give me the compression I need for working out.  It helps me!  I have to take the second sleeve off about an hour after working out because it is too much.  As with all this LE c#@* you have to figure out what works best for you. 

    Binney - I LOVE the LE badges!  Laughing  Unfortunately, I've only earned two thus far ..."Advanced Brownie Eating" and "Doing LE exercise and MLD Regularly."  Love it, love it, love it!  I'm still working on the other badges...

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    Binney!!!!!!!!!!!!!!!

    LOLx1000!!!!!!!!!!!!

    For what it's worth, after I hacked the arm off of my silverwave I of course....

    stuck the fabric in my bra!

    For me the fabric from the sleeve was not effective on the breast LE....the tummy band has "sharper" wiggles. Maybe for someone daintier is might work, but for me I need the tummy band fabric.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2011

    SleeveNinja: Great name you got and when I get comfy sleeves you can all help me change my user name from Sicklysleeves to something cooler. OK!,

    Regarding the elbow crease that squeezes and rashes out like a boa constrictor, With my first off shelf sleeve I tried foam given from my MLD girl but had a devil of a time inserting it. I did finally get it in. Felt a bit better, that sleeve was too tight though so I am now trying a custom made.(2nd one)  What is Artiflex?

    With my second attempt sleeve (custom) I tried the glue which did help but still wasn't the best as I was getting inner crease bother.  I figured that sleeve is too big and slipping.  I got my fitter to take back the sleeve which she was really good about. She is very concerned about comfort for me.

    While we are trying to find another brand I ordered a Soledia CCl2 sleeve from Sue.  After reading this thread a few weeks back I thought the CCL2 sounds great with that inner crease pad and comfort.  Although I am worried about it not being a flat knit as my MLD says that is the cream of the crop way to go for containment. I use mostly as a preventive as I don't want to become the elephant man quite yet! Sorry for the pun as I feell bad for you girls that are suffering so much., hang in and we will see if we can get you some comfy soleidia products made for you)

    Girls!   I said I would get back to you on contact info.  So If you all want new types of products made then email Sue Callison's contact person who is in direct line with the Italy manufacturer.

    email to Mr. Brodini at brodini@solidea.com. Again I will mention that Sue said that if we let him know what products we want made and he gets enough response they will seriously look into producing. Also Sue said to please mention that we are in contact with her so he sees the connection.  Personally I want comfy gloves that are not restricting and tiring then I wouldn't mind them coming up so high towards my finger tips.

    Don't know when I can get back on thread. Busy with fam. Will keep you posted on the Solieda's and love any tips you can pass on.

  • Springtime
    Springtime Member Posts: 5,355
    edited April 2011

    Trisha, I tried an under armour T and my bilateral wave sleeves for my last yoga, and it was better. I think we have to try so many things to figure out what works! 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    Hey wavers. Just checking in. I still think the silverwaves are doing their thing. I think the waves do have some benefit above and beyond compression. Still I would love to get it in a higher compression. My fitter said the top is really giving me almost nothing. Still it seems to work pretty reliably.

    I guess when I get my custon sleeves and juxtafit, I will have a basis for comparison.

  • Estel
    Estel Member Posts: 3,353
    edited April 2011

    I wish they came in smaller sizes!  I use mine primarily when I exercise with one of my worn out compression sleeves on top of it and I can tell a difference in a good way! 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2011

    so I don't know quite where this falls...but I decided to experiment with wearing my "boobie wiggles" as much as possible....and my arm actually got smaller. I was inspired by the post about how important clearing the chest is.

    When I got up this morning my LE arm was actually a tiny bit smaller than my good arm.

    Go figure!

  • Nordy
    Nordy Member Posts: 2,106
    edited May 2011

    What the heck is a boobie wiggle??? I keep invisioning "Are You There God, It's Me Margaret" and her saying, "We must, we must, we must increase our bust." LOL... Oh wait you said, "wearing" the boobie wiggles, not "doing" the boobie wiggles!

  • Springtime
    Springtime Member Posts: 5,355
    edited May 2011

    I'm lost too on the boobie wiggle?? and was it on your boobie or your arm??? (LOL never thought I'd be typing that out!!)

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2011

    It's my nickname for using the silver wave fabric for breast LE. It leaves wiggly marks!~~~~~~~~

  • Estel
    Estel Member Posts: 3,353
    edited May 2011

    cookiegal - 'boobie wiggles'  Laughing

    Do you sleep in it?  Are you the one who cut it up and uses it across the chest? 

  • Springtime
    Springtime Member Posts: 5,355
    edited May 2011

    Cookie, oh I get it now!!! 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2011

    yes....I am.

    I really am ready to try to line a bra with it.

    I actually made a bra out of one, but it's a little akward.

    It may be a fluke, but when I slept with it, for two nights, I woke up with my arm perfect. And this is with no sleeve at night.

    So go figure...but I feel like I am on to something.

    ~~~~~~~~

  • Estel
    Estel Member Posts: 3,353
    edited May 2011

    cookiegal - That's great!!!!!  You could market it ... there is a fan company called, "Big Ass Fans" ... if they can get away with that you could market your bra as "Boobie Wiggles."  Surprised Laughing

    Whatever works!  So glad this is working for you!!  Ingenious and creative! 

  • Springtime
    Springtime Member Posts: 5,355
    edited May 2011

    Boobie wiggles that suck the fluid out of your arm overnight! It sounds like a miracle!!!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2011

    In all fairness, my arm always gets smaller overnight...it just plumps up pretty quickly in the AM...but I think if you have breast LE and can manage that it will help the arm

  • toomuch
    toomuch Member Posts: 901
    edited September 2011

    I just got a new arm care and I they have made some slight changes to the band that goes across your back. I didn't think that it was possible but the new sleeve is even more comfortable then my first one! I still love my wave but when my arm is acting up the arm care is great!

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2011

    Toomuch, there was a recent email from the LymphemaSleeve Co that they've increased the compression over the shoulder--it sounded like they worked out some minor issues. It is a great product and Sue is great to deal with.

    I couldn't find the email, but it's on their blog:

    http://www.lymphedemasleeveco.com/announcing-revolutionary-new-sleeve-caps-shoulder-with-compression.html

    Announcing: Revolutionary New Sleeve Caps Shoulder with Compression

    THIS IS A LIFE CHANGING SLEEVE

    Effective, comfortable, with the unmistakable quality of Solidea. Like the original Arm Care, this sleeve has a soft dorsal support band that keeps the sleeve in place without a constricting upper arm band and now has compression that caps the shoulder.

    Solidea's extensive research, development and clinical testing of highly specialized fabrics and technologies has produced revolutionary compression garments. Luxurious and silky, the technologically advanced fabric is made with silver-ion bacteriostatic yarn to reduce bacterial growth and help disperse heat. Remarkably comfortable with a breathable, 3-way stretch circular knit that is proven to maintain consistent compression levels.

    ESPECIALLY USEFUL IN COMBINATION WITH A SILVER WAVE SLEEVE

    Each sleeve works a bit differently, one with higher compression to move fluid deeper and the Silver Wave with micro massage fabric that more fully activates the capalaties just below the skin in the lymph system. I use the Silver Wave to sleep and exersize in, and the Arm Care most days to keep any swelling at bay. I love the combination and now my swelling will stay down so that sometimes I don't wear any sleeve at all.

    Learn more on our website or call us with any questions at 888-841-8834.

    Help us get the word out -- like us on Facebook, post on your blog or pass on this page. Thanks for your support!

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