GRRRRRRRRR I HATE LE..........
Comments
-
Glad to hear, Kate. They are snug, but not torture devices. Sometimes they actually feel GOOD! When my arm is achey and I wear sleeve, the support can be such a relief. Your gal will make it right!
0 -
I've flown a few times with my LE sleeve on without any problem. Howev er, I recently took a flight that required a connection and that just proved too much for my LE. I paid extra for moe leg room on 2 flights a week apart and so was quite relaxed on those flights. Then 2 wks later I had to take a discount airline with a connection, about 2-12 hours in the air first leg, 2 on the ground and then another 4 or 4-1/2 in the air. That last flight had me wanting to rip my sleeve off because it bothered me so much at the wrist and I only found some relief by pulling the sleeve back about an inch from the wrist. I don't know why that helped bt it did. The top of my arm swelled and I could feel it but couldn't do anything about it.
Since that trip I've been very uncomfortable with my LE and went to the LE therapist for a treatment and that helped a little. Now I may have a possible seroma in that underarm area and I'm wondering if it's caused by the LE? Does anyone know? I'll be having an ultra sound to find out for sure =but could more LE treatments help push that seroma away?0 -
Fitz, it would be kind of late to get a seroma, but it could be a pocket of fluid and LE therapy would help.
I started another thread in disgust, as the NLN is backing off from endorsing women at risk to wear compression when they fly: they say--based on one horrible, useless study--that it could be dangerous.
Do you have a night garment? I fly in my Solaris. Or wrap.
Kira
0 -
I took my first flight last Sunday since truncal LE diagnosis. Had on my Belisse compression bra, sleeves & gauntlets. The lady where I bought them said to leave them on for several hours after arriving. The LE & wound care doc said no problem taking them off immediately. In any case I went to sit with a friend dying under the hospice program in a nursing home & there was no time to remove the bra. I wore it straight 22 hours & put it back on after a 4 hour break for another 12 hours, including the flight home. I had no time for MLD or even walking, but the Belisse really seemed to work well.
0 -
Kira, I don't have a night garment but occasionally will wear a compression bra to bed if the LE has been bothering me. Most of my LE is in my upper arm, back and right breast. If anything I'm considering getting a gauntlet to fly along with a new compression sleeve in case my present sleeve is stretched out at the top. It didn'tseem as tight this trip that I had the problem on. I can't imagine not flying with one. I wouldn't want to take that chance. Where is your new thread you started?
0 -
I started a thread about how the NLN new position paper on risk reduction refuses to support wearing compression garments for women at risk who fly--based on a lousy study.
http://community.breastcancer.org/forum/64/topic/787593?page=1#idx_5
I heard from a person high up in LANA today, and they use compression on at risk patients who fly, if at high risk--this person is also on the NLN board that put out the new position paper.
It just ticks me off that they used a garbage study, 11 years old, where one surgeon talked to some of his patients and concluded that compression is a RISK for causing lymphedema in women who fly--all of his patients had ALND, only some flew and he just asked if they used compression and if they got LE. No evaluation of the garments, the individual risk, and of the possible LE.
No word from the NLN, and not expecting any.
0 -
omg...it takes a lot to make me homicidal.......
About 2 years ago I asked a co worker to switch chairs with me to shift a repetitive motion from my my LE side to me good side (this is when I still had disabling frozen shoulder and very painful spasms)
Well I guess at the time he said that I manipulated cancer to steal his chair
(don't quote this because I may take it down)
!!****####
0 -
peop;e CAN be idiots, can't they???3jays0
-
in my mind, this is what i do, to ple like that.. throw em under the bus!!!!3jays 0 -
Cookie, when I came back from medical leave, I was exhausted and my LE wasn't under control, and the director of my then workplace told me they were in a financial crisis, and I needed to put their survival before my own and quadruple my workload immediately, and then he told me he "knew what it felt like to have breast cancer" and I said, "funny, I had no clue"
Kira
0 -
Kira, your former director's comment goes under the 'Stupid Things People Say' thread.
3jays, I've not seen your bus in a long time. It made me smile.
0 -
love the bus......
0 -
Love the bus idea. Will put that in my LE toolkit for the Doc's in LE denial. What is wrong with these people! I would pray they never get a hard to handle illness but I almost think they need to be incapacitated for at least a few weeks. Would set them right in a hurry! How selfish and hard headed can one be. grrrrr is right!
0 -
Cookie- Oh if only those who don't have LE, who say rude, inconsiderate and obnoxious things to those that do, could be struck down by some kind of anti-LE curse which would cause their most important parts to not swell but shrivel!
0 -
Kate, you do have a devilish perspective there!
0 -
grrrr anybody have AETNA for their insurance? If so do they pay for the garments. My hubby got a job offer yesterday and he took it just to get away from the stress. No extra money and insurance is higher. grrr
On the bright note, I called my fitter and they did some insurance looking and I can get a whole new set and 2 more bras so they put a quick order in. yay...what else can I get before it runs out in two weeks. lol I was so close to not having to pay a dime for anything...only 8 bucks left for my out of pocket max. I just hope we can survive on less money.
0 -
KittyDog - I just switched from Aetna to Kaiser... but Aetna did cover two Jobst sleeves right before we switched.
0 -
grrrr. we have cigna, who just raised their deductibles, and copays.. i think my le "gear" is still @1oo%. calling to ck tommorrow, as i have another set to order.. in jobst, this time, i think. the gottfreid works really well for a flare, but the materials' not comfortable. this one w/be for everyday........getting the gloves in the longer size. it works so well for me.3jays0
-
Hi Ladies,
Hope you can help me. I have mild LE mainly in my hand and am in the process of replacing my sleeve and glove.
The last one that was ordered for me were so mismatched in colour and texture etc that I was so reluctant to wear it.
My physio/LE person was thinking that Mediven 95 would be good but looking on the internet it looks like the same as I had.
Does anyone know of any that look half decent that I could direct her to?
I have tried a gauntlet my lymphedivas, it controls my hand but not my fingers swelling.
Any advice is welcome
Hugs,
Viv
0 -
Vivygirl, I just heard a presentation from Medi, and I personally like the Medi 95 gloves, and what I heard is that Medi 95 has full compression in the fingers and half compression at the wrist--with the assumption that you wear it with a sleeve. The mediven material, in contrast, has only 50% compression in the fingers, primarily for people who don't swell much in the fingers and to reduce finger fatigue.
I usually wear custom Juzo gloves but also do use the medi 95 gloves, and I was between two sizes and felt better with the larger size--I believe it's size 3, class 1.
I also have a medi 95 sleeve that is nice, so they'd be matched.
Nothing fancy--like Juzo is coming out with tie dyed sleeves right now--but they work for me.
Good luck and keep experimenting.
Kira
0 -
ohhhh tie died sleeves. Now that sounds cool! Lets just get them to making something besides the three boring colors in custom.
0 -
Here is a website that has some cute sleeves.
http://www.lymphedemaproducts.com/products/mysassysleeve-decorative-sleeve.html0 -
Fitz, I love the idea of a decorative cover. I don't know why I have to be such a stick in the mud, but couldn't they just skip the pink ribbon part of it?
0 -
You all helped me pull up my BGP (big girl panties) a few weeks back when attempt #3 at getting a glove (a class 2 jobst elvarex classic glove) put me in a world-class funk. Several of you suggested I might be compression sensitive, so when my LE therapist fitted me for attempt #4, I insisted that I wanted to try a class 1. She was pretty skeptical, but we compromised with me getting a class 2 juzo helastic that ends at the wrist (that I will wear with a class I juzo soft sleeve) and also a class 1 juzo helastic that ends at the elbow (that I would wear without a sleeve).
Well, the gloves arrived today. In the past, I have ripped open garment packages like a 6 year old girl on her birthday, but I've been so discouraged by the recent past failures, that it took me 2 hours to work up the courage to even open the box. When I did my heart sank: my therapist inadvertently checked of the box for helastic silver not regular helastic. Turns out that the helastic silver is a strange silvery/beige tweed color that looks beyond medical. But, LE is no fashion show and any glove would be better than wrapping, so I tried them on. It's too soon to know whether either will control the swelling, but here are my impressions:
Class 2 juzo wrist length: the fabric is stiff, but not as stiff as the jobst classic elvarext class 2. it's hard enough for me to move my fingers in the class 2 juzo that I doubt I would be able to wear it if I have to use my hands (wrapped fingers are much more functional). That said, the class 2 juzo didn't reduce me to tears the way the class 2 jobst elvarex did.
Class 1 juzo opera length: I can move my fingers enough to type and hold a cup. I've been wearing it for about 90 minutes and my fingers aren't numb or discolored. However, this may be because the fingers are pretty loose. (My therapist purposely was generous with her measurements, but my optimistic side thinks my fingers are smaller than they were a month ago.) Again, it may just be because the glove is on the loose side, but I think I like the way the helastic silver fabric feels against my skin better than the regular helastic fabric. Wouldn't it be ironic if my LE therapist's checking the wrong box on a form ended up being a good thing! KS1
0 -
just remember: those have no compression.. they;re just covers, but, saying that, they beat boring beige, anyday!!!hahaha
my swelling is bad on my fingers, the worst part. i like Gottfreid for my gloves, so got a matching set of sleeves. the material isn't as comfortable as jobst, OR juzo; but they reduce the swell better. i don't like the sleeves, at all. going jobst for both, in purple, for my new set, i think.3jays
0 -
KS1 it is a strange color!
I will say the silver really helps in hot weather and sun, my arm has actually gotten burned through other sleeves. I have made peace with the odd tone.
OK I got a purple glove.
I hate the beige, and in summer I don't do the black outdoors, so I got purple. Go figure!
0 -
i don't like the pastels, they get as dirty as the beige did, so i went" lighter" for summer..purple, also...go figure..chest le feels like??
maybe i have a new flare, there, as well.3jays
i have a question.. i have dev a tightness under the arms, feels like balls are in the armpit.. is that what breast le feels like??3jays
0 -
Yesterday, had Kinesio taping done from axillary to inguinal and also electronic acupuncture. LT is ordering a lymph pump to connect to a vest to wear to perform the motion of mld. Soon to be released from LT, so will have a little break before recon surgery on 7/9. Then I'll be going back on a new consult and see how things are going.
0 -
I was hoping the purple would not be so pastel....it's really pastel....was also hoping it would have some blue in it....
I was wearing it at work and literally it kept distracting me...."I'm purple and I'm on your hand."
0 -
Still waiting on my sleeves and am getting frustrated since I can't do anything around my house in the meantime. Even if I just vacuum my arm starts killing me. My LE PT is recommending a sleeve with less compression but the fitter says she can't find one in a shorter length with less compression. Does this make any sense? Wouldn't all compressions come in all the different lengths? My PT is recommending the longer length to get the lighter compression. Should I be looking for a new fitter? Supposedly this one has 30 years experience but just not understanding why I can't get precisely what my PT thinks I need.
0
