I am new to this forum and my situation is a little different. I did not have any LE with my double mastecomy etc. However, my breast cancer returned and the way I knew was my right upper arm was 2 inches bigger around than the other. After a Pet scan the cancer was found in lota places unfortuneatly. I am going to PT twice a week and wrapping 24/7 to see if we can get some of the LE down. One of the decisions I made was to take a 6 week tour in Europe before I start intensive treatments. Now my questions for this group. I leave in 3 weeks. My therapist said I could use a sleeve and a gauntlet for my trip instead of wrapping. Good thing as no clothes fit over wrapping. So what brand do you suggest I get? I looked at divas and I am intrigued. Are they any good. I read in someones post that they aren't to be hand washed, but I won't have access to a washing machine except once during the 6 weeks. Do some colors get dirty faster than others? All suggestions would be greatly appreciated as I am overwhelmed. Thanks. Mare
Hi Mare, my advice is you better get a glove at the very least for the flight (along with your sleeve). You may find the sleeve will push fluid into the hand and the gauntlet won't help. But you certainly can try it once you have landed, but you'll be safer having the glove on hand. And do take bandages for nighttime wrapping. You can't sleep in your sleeve. Sorry, but it's the only way to get that swelling down. Also learn a good manual lymph drainage (MLD) massage. Also watch your arm while you walk, don't let it swing down. And be careful not to carry bags or packages with it. As for washing, you can certainly wash them by hand, nothing will happen. They take longer to dry than you would think, so you will need at least two pair to rotate. The brand doesn't matter too much. Ask your therapist about the correct compression rate. It would be ideal if you could find a local fitter so you could try on some different ones and get a feel for your size and fit. Good luck!
I looked at divas and I am intrigued. Are they any good.
Divas are great. I am probably one of their biggest fans. Having said that, go to a good fitter and get their best suggestion if you are only wearing this ' occassionally'. I agree about the glove. Be very careful of your hand.
Others may disagree, but IMO The BEST person to advise (and measure ) you is a LE therapist. A CERTIFIED LE therapist. Go for 1 consult and measure . Afetr that , meaure yourself as well! The fitter does not have to wear it - you do. I did not have the best fitter ( though I was told I did !)Enjoy your trip!
One problem is that the seams where the sleeves join the body are pretty thick. Even when I wear it inside out, it can sometimes be a problem.
Great point KS1!
Pls keep this in mind! Even with my gloves inside out, seams can be harsh with daily wear.
I'd love a beige and black T with a good short sleeve that does not cover the top of my compression sleeve , but is longer than cap which could be irritating. I would love rounded or V neck. Ideally, I would like something I could wear as a ' stand alone ' with my sleeve OR under something else, where nobody could see it at all.
Now, work the magic! thx for always listening.
Follow up on JUZO DREAM:After calling about the no-return policy and leaving 2 voicemails a few weeks back, I finally reached a woman there named Greda who was very nice. She promised me that she would talk to ' the owner of the company' and no matter the outcome, call me back. I did appreciate that.
She called me today and said they would not take Dream sleeves or the tie dyes back if I ordered and it did not fit, as they were custom colored. I explained ( once again) that I was aware they were custom colored, but we could have fit or skin issues with them necessitating a return and again, asked for some sort of a grace period. She said it would be a lo$$ for them. I nicely told her that I appreciated that, but felt that in the interest of good customer service , they might take the hit with a small grace period and hopefully, end up with more sales in the end . She said the owner said no.
I told her it was very disappointing and I for one, would not order under those circumstances. She went one once again to explain ' custom' to me. At this point, I was starting to think perhaps she thought I was a bit daft. In any case, I listened patiently and explained that I had TWO, not one but 2 custom gloves (NOT Juzo) that were ill fitting and returned without question. She said they would take custom gloves back for alteration. I explained further that these went back for good. Returned. Period.
She said they would never do that, but I digress.
I told her I had wanted to try their tie dye, but I guessed I would have to stick with Lymphedivas.
She then went on to say, and I paraphrase as accurately as possible :"We find that customers who go with Divas may eventually have to come to Juzo when their lymphedema gets worse."OK, now I was getting flared .I just said :"What ??!"She said : "Lymphedivas are fashion sleeves ..."I cut her off.I said : " I would say your tie dyes and Dream colors are for fashion, but hopefully, also for function!"She replied " Of course !"I said : " I can assure you I do not order lymphedivas for fashion without function. I have lymphedema! The last thing in the world I would wear for fashion is a compression sleeve and glove all day! I was just at Kohls and would have grabbed any number of beautiful tops before thinking of ordering a sleeve or a glove for fashion alone! I dont think Lymphedivas would appreciate your implication that their sleeves are not for function!"She was defensive then of course and said : " I really dont know if their sleeves function as well as ours or not."I said : " Then I believe you should not be implying they do not since I will be reporting this conversation." (And she most certainly DID imply it as I may be other things, but NOT daft!)So, things did not go well with Juzo. Buy them if you love them, order if you will, but buyer beware . I was not feeling the love.
I where tank tops with my Jovi Sleeve, but I rarely suffer from cold, gotta love the hot flashes, I guess they're good for something. Also, I tend to sleep on my unaffected side, so the sleeve keeps the outside arm warm. A compression T-shirt would be kind of nice.
The LymphaDiva's sleeves are a little long for me too - but I know the short would be too short.
My compression fitter did tell me that she recommends Juzo over the other brands because in their experience they last longer and hold up better. I was a little disappointed that my Lymphediva sleeves did not last as well, and they faded pretty fast too.
Those cotton armsleeve things look pretty cool, but would they add compression, they look pretty tight?
Thanks purple and victoria for the advice. I need lots of help. I am sure this won't always be overwhelming, but now it is.
but I know the short would be too short.
Why would you say that, Linda ?
Because my arm is 19" long, and the short is for up to 17" s
Ok ladies, Josh had told me to check out the sleeves he and his dad are wearing on their FB link. I wasn't quite sure I could get in since I no longer have a FB acct., but I clicked on the link and then photos. Their pic is awesome ( but I could not ' like it' )Anyway, I was surprised to see my own photo ( lil ole me!) in their series of pics in the top row, far right, wearing the onyx crystal with the IMAK gray glove.
So cool! You look great!Was going to go to the gym after work today, but went straight home because of the snow. Now waiting for DH to get home. We're going to take a walk in the snow and get some pizza.
Dear Mare, I am sorry to hear of your situation, but am very glad you are taking a pre-treatment trip. I would definitely fly wrapped, and bring your bandaging supplies and wrap at night. (Bring extra gauze ... it's a royal pain to wash in sinks!)
With respect to what type of garments to get, are you thinking about off-the-shelf or custom. For off-the-shelf, if your LE allows you to wear a class 1 garment, consider the Farrow glove. As gloves go, it is inexpensive (about $90 at Brightlife.com), comfortable, and comes in a pretty large range of sizes. For sleeves, I like the juzo soft sleeve ... soft, comfy. It also comes in a variety of sizes. KS1
PS I went on a long trip last year while in the midst of 24/7 wrapping. PM if you want advice!
Yay Purple, fun! Nice pic. I have really been wanting that black crystal sleeve. I have a Large/Short purple paisley on the way to me now. If it works out, I just may have to get that one.
Purple, you look really good in that black sleeve but you will look even better with that matching glove to come. OH.... Please may gloves drop from heaven tonight along with a lymphediva tee!
Got to go fight the traffic. I think I will take in the opportunity to do some belly breaths and fist pumps at the red lights.
Got two BiaCare items today. The MedaHand and the MedaGlove. Since the bandage liner in medium I have is a bit too roomy I ordered both of these in small. They are both pretty snug. Now, I'm wondering if I shouldn't have ordered mediums. I'm at the end of the small range. But maybe they should be snug. It's so hard to know how these OTC items are meant to fit. I don't want to send them back for mediums and then find the medium is perhaps more comfortable, but doesn't work as well compression wise.
OH.... Please may gloves drop from heaven tonight along with a lymphediva tee!
You crack me UP!
Speaking of OTC gloves, I got my IMAK ACTIVE today, but it as not the active ( DOH!)They are going to send me a return label and refund as they have no more smalls .
Sounds like a tough call, Victoria.
Would wearing it for 30 mins or so give you a better idea or ???
Oy Purple! How frustrating. Well you can always order Imak Active Gloves from Colonial Medical, but it will take about 3 weeks. Grrrr.
Yes, I can wear it for awhile and see. But I wanted to be able to feel good about returning it if need be, trying on is one thing, wearing is something else. But I asked my DH to try it on and he was able to, so I think it will stretch and be ok. I'm feeling a little better about it now.
I'm really hoping the chip foam in these products will be a bit more aggressive in bringing my hand swelling down further than bandaging. Most of the surface swelling is down, fingers are down, but my hand has a thickness that I'd like to see gone.
Both of these products are well made. I am really impressed with BiaCare.
But I asked my DH to try it on and he was able to, so I think it will stretch and be ok.
VicWhen you get a min. would you mind sending me a link to that Biacare product ?I'd appreciate it.
So has anyone ever heard of a LE suppliers fair for those of us with the LE challenge - wouldn't be great to go to a convention, learn about different self care techniques, LE news, and try see and try on all of the options available to find out just what is right for us - If you know of one for us LE's I want to go!!!
I'm sure the NLN has such conventions.
Many years ago, the NLN did put on a patient conference. But when they tried it a second time, there were so few registrations that it had to be cancelled. So the director is reluctant to try again. The research conference (which happens every other year) is open to clinicians and researchers only, except for patients who apply to and are accepted in the lymph science advocacy program (LSAP). BeckySharp and I participated this past year; Binney and OneBadBoob have done it in the past. It's a wonderful, wonderful experience (but too expensive!) if you are accepted, which is based on how much you are involved in LE advocacy work. Patients have full access to the vendor exhibit hall, and every single garment maker, pump maker, etc. shows up. But as for a patient 'fair,' with is a wonderful idea, the NLN is not our resource for that.
One organization to approach about doing something like a patient fair could be the Lighthouse Lymphedema organization, in Atlanta. They do put on patient events, and I hear that they are terrific. If a lot, lot, lot of patients go to an event, I'll bet the garment makers and LE product distributors would be there.
Thanks for that info. I actually thought all pts could go. Too bad the expenses are so high too
Got a new beige Farrow glove from http://www.hightidehealth.com/farrow-microfine-compression-gloves.html It is so soft and silky. I rebelled against the beige color for some time, but there are occasions where it looks more discrete.
Here's a couple of pictures. See how soft and silky it looks? Just trim to desired length. Ignore my thumb, please! Yes, it's swollen, but that's a bad angle, it's not that big!! Ugh!
Just got the juzo expert glove, off shelf from brightlife. It is the one Binney tried with the diamond pattern with the breather holes. When I went walking today, I felt the breeze go thru the holes. Can't wait for hot summer to try. ( Well I wouldn't wish hot summer on anyone with LE)The material is very soft. I caught it on Velcro already. Be careful. I love this glove, Feels a bit lighter in compression than my juzo esprit. I hope it is as durable as the esprit glove.
The beige looks good, Vic!
That breeze does sound inviting. This is the first time in my life that I am not looking forward to summer. If I recall , that glove was a little pricey (?) I'll have to look it up. Pls pop back in and let us know about the function as well. When I got my Farrow, the first thing I could see was that by bedtime, my ring fit ( tho I would never dare wear it overnight)thx
I just came back from a trip to the States. The flight was the first time I wore my Medi sleeve. My sympathies to all of you who got to wear a sleeve all the time. My Farrow glove is pretty loose around the wrist, so I didn't have any problem with double compression. I did wear a looser top so I could wear the sleeve better. My DD was there too, so she did all the heavy lifting, which I can't do at all. I found the sleeve a drop bothersome, but the fit was good. I couldn't wait to take it off after we landed. During the long flight I raised my arm a number of times and did some pumping. Now we'll never know what would have happened if I hadn't worn a sleeve, but I didn't want to take a risk!
I also felt that my hand and even the other non LE was more swollen during my trip. Maybe that was because all indoors is so overheated. I was pretty bad with MLD and exercises so that could have contributed as well. I had a great time, in spite of the frozen outdoors, and now it's back to the grind. MY replacement Farrow glove was waiting for me as Nancy had promised, and I returned the black one, and got my credit. I am still sorry that the black one didn't fit well.
Ordered the jovipak you recommended LindaK. I am excited about it. I guess you can tell it doesn't take much to excite me.
Kay - it takes a couple of nights to get used it. They gave me this sticky stuff to put on the counter to help me don the glove the first time, but now I can put it on with my donning glove. So, should you feel a little claustrophobic at first, it goes away really soon!!! Did you get the sleeve? I wore mine last night and my arm is already looking better. I've been living in denial the last couple of weeks or more - if I pretend it's not there will it go away? Anyway, glad I wore it last night. Also, my chest one really helped my truncal - I rarely need to wear that one any more. I'm so excited for you Kay - it's the little things that make us happy.