GRRRRRRRRR I HATE LE..........
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KS1, it sounds like the Bat Mitzvah was WONDERFUL!!!! Again, mazel tov to you, your daughter, and the rest of your family.
Leah
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Mazel Tov, KS - sounds like a great time.
OK, I have a question - I have truncal LE, so I don't wear an arm sleeve. Is it OK to ask someone about theirs or to commiserate about the torture of wearing compression (I wear nice hot compression shirts)? My compression isn't usually as obvious. Is it better if everyone just ignores it? or is it better to know you're in good company, so to speak?
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Bookart -. I often comment or inquire when I see someone in a sleeve and take their lead if they want to talk about it or not. I honestly get excited to be able to commiserate with someone live and in person. LE is LE, whether your compression is visible or not. My arms are very mild and half the time I can go without compression but my truncal is all the time and I never go without compression. One the few times I have tried to wear a sexy bra I pay for it. I do sometimes wear a compression vest with a pretty bra over it just to add some shape and feel a little sexy.
It is nice to know I am not alone out in the real world...
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That's a really interesting question, Bookart. It's kind of like wondering if you should acknowledge other women who are chemo-hairless after your own hair has grown back.
I sure can't speak for everyone, but for me it's comforting to be acknowledged. Once when I was shopping a dad with a little boy about three or four years old stopped me and told me his son had been badly burned and had to wear garments like mine. He showed me his son's beautifully healed arms and assured me I'd be fine some day too. It was so sweet and kind that it actually made my day, even if it was completely mistaken. I didn't bother to tell him my garments were for LE, not for burns, because I just felt like we'd connected, and it wasn't even important.
What I find difficult is attending ACS or cancer support group affairs where there are a lot of bc veterans who don't have LE, and they see my garments and say things like, "Oh, lymphedema -- I don't even want to think about that!" It's so isolating and awkward.
Go for it, Bookart! I do like Michelle's comment about taking their lead, too.
Be well!
Binney0 -
Be careful what you share Bookart! I am kineseo taped from breast to groin. I was on a group Skype with my goddaughter and her mother. They did not understand the taping concept so I raised my shirt and bra to show them my hot pink tape when my goddaughter's husband walked in the room! Too much sharing!! Many people have asked me about the wrapping and sleeve. It does not bother me. If I see someone (and I don't see many) I think I would wait for them to take the lead. I am amazed at how many people know someone or have a relative that has had bc and some even knew about their LE. Becky
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Yes Binney, isolating and awkward and incredibly insensitve and rude. Aren't we wonderful people for taking a bullet for others! The sad part is that they may one day get it. They may not be as immune as they think.
I was at a party on Saturday and chose not to wear my sleeve and glove. I know I should have but sometimes I just can't face the questions, no matter how well meaning. I usually respond by telling people what it is (the abridged version!). I'm thinking that in future I'll just say it's a long story, and leave it at that.
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Jo.........just got done saying that to my daughter the other day. We were at the hairdresser together, and a woman said to me "what did you do to your arm"............................I said "cancer"................She walked to the other side of the room.....................I yelled after her................."hey they told me to stay away from people, but you sat next to me I didn't sit near you..........................."but honestly it isn't catchy ask anyone I have rubbed up against"............She left the salon, my regular hairdresser had to sit down she was laughing so hard, and there were 3 BC survivors in the room laughing harder then she was.....................I get asked everytime I'm out with the wrap on..................what the hell am I suippose to do, its summer, walk around in a Parka..............screw the people who don't like my arm, no one tells them to ask questions, they should mind their business.........................that is unless they have, or know someone with LE, and are truely caring about our problem............
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Oh Ducky--you are something else! I bet you light up a room. I always put a stockinette over my wrapping and it looked like I had a broken arm so I did not seem to get many questions. I get far more over my sleeve and glove. Parka season cannot come soon enough. Thanks for the laugh. Becky
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Ducky--that's a classic. Wish I had the guts....
Thanks for the laugh.
With admiration: Kira
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Honest Ladies.......................I have always been "I say what I think" type of person, but lately my comments have really gotten out of control.......................guess I just don't give a shit anymore what anyone thinks...................That is what one of my sons said to me..................."cancer came to the wrong house when it came to you".........."it has no idea who it is messing with"......................."living in your body would be like living in "hell" to cancer, so by now it has probably left".....................................with or without treatment...................I told him.............................hmmmmmmmm...............well just remember that.............and when I was first diagnosed he was in the room with the BS, and said to him..............."cancer has no idea who it just picked to mess with"......................after the BS got to know me he said to my son......................."I see what you mean about cancer and visiitng your Mom"....................now I'm really a nice person....................honestly.................well at least I think I am......hahaha
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Ducky, not only a nice person, you're a gifted, uh, educator.
You go, Ducky!
Binney0 -
No Binney.........................you hold that honor....................your a book of knowledge when it comes to BC..................Have learned a lot of what I know from you.......................your good girl................hugs
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Questions:
1) When you all elevevate your arm ... after a day of overuse or extreme heat ... is it better to elevate with or without sleeves and gloves on?
2) Is it unwise to take cool showers during the summer (like is there an issue with rebound swelling)? Also ... is it wise to use cool packs or soak your hands in cool water to reduce the swelling ... I know that ice cold isn't good because of the rebound swelling issue ... but would cool water be OK?
Thanks, ladies!
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hey swell sisters: i've gone and done the thing i've been afraid of for over 2 yrs now... i LOST my gloves!!! we tore the onco's office apart, and the car, no gloves!!!at 500.00 a pair!(thank you for ins!!!!)
im hoping i'll get a call tommorrow they found them... i even cked my underwear; in case they fell down when she did the breast or should i say chest exam.... say some prayers, light some candles, that we hear something...
she did write for new ones (bf i knew i lost them!) my problem is, my ins fired the fitter, 'cause he did such a bad job with me...they haven't replaced him yet... do any of you know; if your ins. doesn't have a provider for you, do you still get them covered? thanks, a slighlty panicked 3jays
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3jays- Oh no! What a nightmare. I do so hope you find it today. I don't know about the insurance--I just know if mine is preferred the ins pays more than not preferred. You will need to talk to your insurance company. Makes one wary to take them off. Good luck!
ducky- I am a nice person too but I almost lost it with a colleague. When I was dxd she gave me some kind of drops called Zeolite. Said if I took the drops daily I would not have a reoccurrence and could even skip radiation. Claimed it cured cancer. Supposedly my cancer was caused by too much metal buildup in my system. Gave me a free month supply and said she sells it and would sell it to me at cost ($200 a month). I looked it up. The company is being sued and is a pyramid sell. Anyway, I returned it and said no thanks that right now I would go with my drs advice. Yesterday she came back to my office with another month's supply saying if I had started taking it when she gave it to me I would not have LE! Said if I would start now I could cure my LE. I needed you here ducky to help tell her off. I am a wimp. I just again said no thanks and that I could not afford the cost. She left saying I was ruining my own health. I dread it now whenever I see her. Life with bc!---and LE.
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DH, that's an interesting question about elevating your arm. Either way works for me. I keep them on to elevate during the day, but in the evening if I'm going to be sitting around I take them off. What works best for you?
Cool showers are fine. In fact, about now that sounds positively delicious (it's 112F here today
)! You want to avoid water that turns your skin red, y'know? Like the ocean in the Spring, or a fast-flowing mountain stream, or an ice pack.3Jays, that's a nightmare!
I've had to return to restaurants to retrieve a glove from under the table (another group was already seated there!), and I've dropped them into the toilet in a public restroom. I have a good friend who's an NP who left her glove on her desk and her assistant cleaned off her desk for her and threw it out, thinking it was a soiled ACE-type bandage. So I've become paranoid about putting them somewhere safe -- deep in my pocket usually. I still lose my glasses all over the place, but a few times misplacing one of these ultra-pricey "accessories" is enough to rivet your focus on them, for sure.
Okay, so prayers for finding the glove today. BTW, when my insurance didn't have a fitter who handled LE gear they had to pay for one who did, but of course you have to be persistent and do a lot of educating.
Let us know how that works out.Becky, that is truly upsetting. How dare she! We want a cure: we're so vulnerable.
Shame on all who try to prey on our needs!Be well!
Binney0 -
JO - Did you tell her that your skin is sensitive? Mine is too and while I cannot find any therapist around me who does the taping ... I've hearing loud and clear the ladies who've done it and it's worked marvelously and I've wondered if I were to ever find someone to do it ... I'd need some thing under the tape to keep me from breaking out. Others have mentioned was it ... pepto or mylanta???? And suzybelle said something about a cream you can buy to put under the tape. Did you tell your therapist ... so if you do have a reaction and she didn't put anything underneath it ... that next time (on a different place of course) she can try it again with whatever barrier to see if that works. I sure hope this works for you! Keep us posted on how the tape works for you! [[hugs]]
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I'm having a bad day and I'm just gonna say it: LE is depressing as hell. GRRRRRRRR!!!
Binney - I'm still trying to figure out if elevating works better with or without gloves and sleeves. Yesterday I thought it was better to elevate without ... today it seems it's doing better with the glove and sleeve. That's why I asked ... thought maybe there was a 'right' way. I wilt when it's in the 90's ... I think I might die if it were 112.
Becky - I have a very low tolerance for manipulative, ignorant people and that lady sounds both. Grrrrr! Have you read some of the thread "OMG They found the cure for stupid." I haven't read it in weeks but the ladies over there cracked me up! The stupid 'cures' that are out there and throw at us. It gets absurd.
3jays - Have you found your gloves? I too am praying you find them!
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Hi JO, as the edges of the kinesio tape come unstuck, trim the part that is no longer sticky with a little scissor -- kind of rounding off the corners as you go. You'll get it to last longer if you just keep trimming the edges. (For me, with showering every day, it lasts a week or so on low traffic areas like arms, trunk, etc, and a few days on my hands- which obviously get a lot more washing and wear and tear). It also seems to help if you round off the corners right from the start-- maybe see if your therapist has tried this. Hope it works for you. It's kind of magic:)
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Jo, from the Stanford information--and I agree with the authority here--Dr. Rockson, who does not recomnend pumps EXCEPT as an addition to CDT:
What about pneumatic pumps?
Pneumatic pumps can be very useful and effective in lymphedema, but
they can never be used as stand-alone treatment, since the pump cannot
supplant the other manual therapies. A pump does not take the place of
CDPT, but can serve as an effective adjunctive treatment modality. All
pumps are not identical: because pumps are used for a variety of medical
indications, it is important that the pump mechanism be appropriate for
lymphedema care.
Once you have completed CDPT and are fitted with a garment, you may
find that you are not completely satisfied with the response to treatment.
In some cases, adding in a pump to those the garment use, exercise, and
self-administered MLD will net further improvement. We particularly favor
multi-component pumps, with at least 6 to 10 individual inflating/deflating
segments. It is particularly desirable to use a pump mechanically simulates
the action of MLD; such devices are commercially available.
Pumps should never be used at high delivered pressures; we definitely
indicate to our patients that not more than 60 millimeters of mercury be
applied and actually prefer a pressure closer to 30 millimeters of mercury.
The treatment sequence should be no longer than 1 hour. Use of a pump
should always be under the guidance of a health care provider.
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Sounds, JO, as if things are moving in a good direction. So glad you have found someone in whom you can have confidence. Glad she is willing to tackle issues beyond the arm. That's a real plus. Good luck, Friend!!!
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Jo-5 I want to hear how the swell spots do for your breast.
Overall my arm has been good the past few weeks....but I have to wear my "boobie wiggles" almost 24-7 now. My breast LE is getting more stubborn. I bought a bra today and my leftie is almost a full cup size larger.
Anyhow I am heading to the Hamptons this weekend, and I wonder how much, if any "cheating" I can get away with.
I have been buying both outfits to wear with a sleeve, but some normal stuff too. I find I am better off sleeveless if I am wearing a sleeve....a short sleeve with a LE sleeve just looks too odd to me. I splurged on a very long sleeve light weight sweater, because all my other sleeve coverups are kinda cheap and beachy.
The cashier actually challenged my purchase...but having decent looking stuff with sleeves long enough to cover a gauntlet makes me feel better.
It's funny...at work everyone knows I wear a sleeve....but when I cover it up I feel more normal...I feel kind of exposed when people can see it.
HAVE A GREAT HOLIDAY WEEKEND EVERYONE!!!
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JO-I have kineseo tape from my armpit to groin and across my back for truncal LE. My therapist and I have not discussed using it for the arm. She does round off the edges and trims any loose ends when I go back in. I can only get it to last for about five days. I do shower. I have to be careful putting on my bra and compression top to not untape it accidently. My former therapist used Pepto Bismol as a barrier but my new (and wonderful) therapist has some kind of barrier like a wet one she uses. I had horrible reactions to tape after surgery and I react to bandaids. So I was wary. But I have had no problem with the kineseo. Also the black is the strongest, pink next and beige is not as strong. I don't know where the blue fits in. I use the pink. The first few times I had it on I did have burning in my breast and trunk. It went away after a few days. It seemed to be internal, not external. Hope this helps. Becky
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Jo--I'm glad the therapist isn't just using the pump--unfortunately I've heard stories where the therapists put patients on the pump and don't do CDT
I'm really glad you're back in therapy and like her, I just got worried when I read about the pump
Cookie: I know Jane/Onebadboob has a whole system of swell spots and compression wear that works for her--perhaps you could pm her.
Kira
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JO-5,
If my computer were faster I'd go back and check for you, but I think Suzybelle did post in a kinesio-specific threat what she does for skin barrier. Sounded like it's working for her. I use the tape on my trunk only and can get it to stay 5-6 days, then it starts coming loose. I was told to trim the ends, but I stopped doing that. It's' hard to cut them without pulling them off a little more, and I'm really numb over my chest and don't like using tiny sharp scissors where I couldn't feel a nick. I get itchy after having tape on for 2 or 3 applications in a row, then I take a few days off. No rashes. And I do have some medical adhesive allergies.
My insurance pays for I think 2 sleeves every 6 months. Something like that.
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Encouraging!
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should have never written my arm was doing well......I'm an idiot.....I had to deal with the suitcase today with all my new clothes for the weekend in the Hamptons, was hoping to lay off the sleeve for a party sunday...and of course my arm swelled up.
Really this is the first time my hand swelled ever.
Bright side is it is actually looks more normal with swelling all over....instead of just the upper.
I swear this freakin' LE knows when you have big plans and moves in.
It's like the grinch that stole the 4th of July.
I still have a 3 hour-ish drive ahead of me. Hubby will be behind the wheel.
Anyhow, I'm gonna have a fun weekend somehow. Maybe this is life teaching me a lesson not to get so sleeve obsessed.
Anyway....have a great weekend all!
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WELL the GRINCH is in Walled Lake MI TOO! I just used my lymphedema pump and was complimenting on how FANTASTIC my arm looks, and sure enough...90 days from my last hospitalization...gosh darn it! MY cellulitis is back! I am soooooooo freakin mad! Hubby just ran out to get a thermometer, our battery is dead. I am PRAYING that the fever stays AWAY! and I can hold out til tomorrow am for the antibiotic. My dr said if I can hold out and avoid teh ER, just show up at the Infusion center tomorrow morning. dang dang dang...I was all set to interview for a new job next week too....AAAARRRRRRRRRRGGGHHHHH!!!!! hugs terri in MI
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I didn't wear my sleeve to the gym yesterday and now regret it. My arm is sore, my hand is up and my side feels like a balloon. So I am grumpy. I do hate LE. Its my own fault I know but somedays I just don't want to think about it
To add to this I have a 4cm lump under my arm but below the armpit on the non BC side. I am seeing the BS on Monday about that.
Hope you ladies all have a great weekend and enjoy the holiday.
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Terri--do you have oral antibiotics??
What is up with this rgroup flare of LE and complications???? LE sure does stink.
Let us know how you're doing.
Alyson: I"ve been wearing my glove as we work on the new house: get's stares from neighbors, but tough....Please let us know how it works out at the breast surgeons.
Kira
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