I saw my first person wearing a compression sleeve
I have been wearing my compression sleeves daily for about six months and occassionally for 7-8 months before that. I have NEVER seen another person wearing these wonderful garments, until two nights ago. I was in line ad Fuddruckers and the lady in front of me had the same sleeve I had on and a guantlet (I wear a glove). I was so excited to see someone else with my lovely beige accessory. I wanted to say something to her, but hesitated and then she was gone.
Is it weird that I wanted to talk to a total stranger just because she had a sleeve on? I would be happy if someone who also was wearing one, got my attention. Would you say anything to a person wearing sleeves? why or why not?
Comments
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I used to hate my compression sleeve.Bad enough that we have gone through all of that but the final reminder...You bet I would talk to someone who had one on. I am proud to talk to folks who have less hair than I..and wouldn't you be cool if soemone wearing a sleeve asked you questions? That is what makes this all ok..we are not alone in this struggle
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I was at a crowded museum the other night, and I saw a guy in a wheelchair who had gloves on. Maybe just for better wheeling grip, I don't know, but I saw him eyeing my black glove that looked a lot like his. I just smiled and he smiled back. No way to really share in that kind of environment, but, yes, I would talk to someone else in a flash. Not weird at all.
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Not at all was it weird, it's something you relate to.
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It's not weird at all! I would also want to talk to someone wearing a compression sleeve, as we have something in common and can relate! We're kind of a smaller group in a larger sisterhood. The first year I wore mine, I kept it covered with long sleeves, as I felt self concious. Then I bought one in black, and and depending on what I wore with it, it looked kinda cool. My sister in law helped me to step out of my being self concious, and said that is "me", part of who I am now, and to wear it proud. So I did! It was liberating! I've had people ask about it, complement me on it, and think it was part of my outfit, and a couple people who have asked have replied that it looks sexy (the black one). Perhaps they were just being nice, but it still gave me confidence to not always feel like I have to hide it.
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My friend wears one to exercise class - she got two really neat ones that have these beautiful designs on them - kinda look like beautiful tattoos.
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There is no way to be sure rather or not someone wants to be approached or not - some of us do are very open and some aren't. If I see someone I'll walk up to them and say and extend my sleeved/gloved hand for a hand shake. This let's them decide if they want to talk or not - if they just mumble something or say nothing then I'll say "It's been nice to meet you" and walk away. If they want to talk about anything I'm ready to yak.
I don't mind anyone coming up to talk to me rather or not they are wearing sleeve and glove. I'm more than willing to answer any questions I can as long as they are honestly asked.
AnnetteS - you don't have to have beige. Garments can be gotten in many colors and some vibrant patterns. As far as I know if you have to have custom, all the wild patterns that are available in off the shelf ones may not be in custom. I haven't wanted any so haven't asked. So far I prefer beige but when my new sets get ordered in Oct. I think I might order one set in a blue because I nostly wear blue in the winter. -
I went to downtown core last week and thought I would like to see someone wearing a sleeve other than me. (I think I read somewhere that it 1 in 5 BCer's with node surgery will get lymphedema symptoms ,numbers could be wrong, someone please correct me!). Anyway I actively sought out all the thousands of walkers and I was the only one with a sleeve/glove. Granted they may have had compression sleeves on under a coat but it was a sunny day and most were dressed lightly, lots in tee shirts and bare arms/hands.
I would have gladly talked to them....if I could just find a person. Maybe they are walking around not knowing they have a LE problem. I don't know.
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I do have a black sleeve and want to get more. I think next time I will get her attention and at least say 'hi'.
I have no idea how people with LE wear long sleeve shirts. I can barely find short sleeve shirts that I can wear over my 'big fat arm' as I saw someone else describe it. I can only wear a few of my jackets......awww the joys of our condition!
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I always think how odd it is that in NYC with gazillions of people I have never seen anyone in a sleeve outside of a medical setting.
There was a waitress in a diner I went to who had one following skin cancer surgery. We would chat about it..it was nice not to be alone.
That being said, while I am glad people think my glove looks cool or is a fashion statement, I still just don't love attention being drawn to it. It's odd..the BC gloves have a lot of seams so designers and artists are curious about it.
I guess the blessing is that my sometimes superficial friends think it looks ok. I have a black all in one that I wear out sometimes.
I do think people at work are just used to it, but when people I don't know come into my office and I don't have it covered, I can get anxious.
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Yesterday at San Francisco airport, I was struggling with a sensor-triggered faucet in the restroom, when the woman at the next sink said 'aren't these things annoying?' I assumed she meant the faucet and I agreed, then turned to face her. Seeing her peel off a compression sleeve, I realized she was referring to my sleeve and gauntlet, which I had been taking great care not to get wet as I washed my hands. So we exchanged a no-kidding-this-is-super-annoying comment and moved on. It does make a difference to know we have company in this craziness!
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I don't think its odd at all. I think of it as an opportunity to talk to someone who understands what its like to have to wear one. That said, I've never seen another person wearing one yet. And I do look when I'm out and about.
I ordered a really beautiful one from Lymphdivas. When I wear it, I get lots of 'compliments'. One woman as recent as yesterday said she thought it was a tattoo (not sure why?). I don't like the attention it draws, as I get lots of 'what's that for?'. But I don't feel odd wearing it in public. I'm open to someone else approaching me about it.
I've got to get another one...and soon. Two reasons--1) I think the one I got should really be the next size up (as I was right in the middle between the 2 sizes), so it feels tighter some times than others. Maybe the difference in swelling? I'll order the next size up this time and see if it makes any difference. If not, then I'll know it has to do with how much swelling I have that day. 2) Wash and wear. It'd be nice to have a second one to wear while washing one.
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I haven't seen anyone else wearing a sleeve yet. When I fly and have a rollaway with me I have to ask for pre-boarding to take a couple fof minutes longer than most people to try and get it overhead. They seem understanding at the airlines but people look at me quizzically, I try to get over the looks but it is a bit uncomfortable.
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Couple weeks ago I was volunteering for a bc survivor luncheon, Horses and Hope, given by the first lady of Kentucky. As women walked past me to line up for the buffet lunch, I approached each woman I saw wearing a sleeve and gave the high five sister salute. None were offended, though I did startle one woman till she saw my sleeve. I praise women who don't deny their LE by wearing their sleeves, gauntlets, gloves, wraps, etc. We are a source of education to others.
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I do a fist pump in the air...usually at the Komen walk. I have never seen anyone else wear a sleeve other than at my PT...
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I was at Dollywood last week when a woman got off a ride and came up to me and said that we matched. I did not know what she meant until she held up her arm with sleeve and gauntlet on. We chatted a few minutes about our bc experiences. I told her about our support group but she was not from our local area. A few minutes of shared camarderie.
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I only know of the availability to get the compression sleeve in beige or black. I would love to know where to get some funky ones.
And yes - I would like to talk to someone else who was wearing the sleeve - and wouldn't mind of someone talked to me.
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Hi, Joanne, and welcome!
Wild and wonderful designs at LympheDivas.
A full range of colors at Barton-Carey, Gottfried, and some from Juzo.
There are links to those suppliers and more here:
http://www.stepup-speakout.org/Lymphedema_garments.htmHope you find something funky and fun. Let us know! Be well,
Binney -
I think we are like baby pigeons - you know they exist, you just never see one.
I have never seen another person in my city with a sleeve. I have seen some folks with stockings (pre LE), but never a sleeve. At first I tried to hide it, and my daughter (my pillar thru all of this journey) said mommy (yes she is 23) you don't have to hide your bald head or your funky arm, it is now who you are, be proud. I often wear tank tops winter and summer (wicked hot flashes) and have cool and funky sleeves and covers. I wear purple, black and beige. I have a SassySleeve cover with pink ribbons and flowers and just ordered one of the new Juzo Tie-die sleeves in purple and white.
I am proud to be a survivor even if all I got was a dumb t-shirt and a "funky" arm. I wear my sleeves with pride, and when people stare, I just smile. I think when I do see someone wearing a sleeve I will greet them warmly and hope that I have found "a sister in arms" LOL.
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It seemed as if half of the people at the LE Summit in Ohio yesterday had on sleeves. Not so many with gloves or gauntlets. It was like an outbreak of measles!
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The strange and wonderful thing about conferences like that is that sense of being on another planet, where everyone in the room knows what you're dealing with and you don't have to explain it to anyone. It dawns on you slowly, and it's weirdly comforting, even if it's surreal.
Binney -
But Becky's comment tells us there is an asterisk to the feeling of being on that special planet. Lots of sleeves; little hand protection. That tells me that women may not be receiving up-to-date care from their therapists, or that they are self-managing with little contact with therapists who are up to date. My own CLT has long believed that sleeves without hand protection are fine; you only need hand protection for heavy duty activity or for flying, in her opinion. I've shared Andrea Cheville's white paper on the compelling argument for hand protection, of course. But how many of us on our special LE planet are missing opportunities to learn some newer messages--notably hand protection and not to be afraid of exercise, if you use it smartly? It's particularly telling that we saw so many women without hand protection, at a conference that attracts LE patients who are perhaps agitating for more information. What about the women who are accepting of what they know to do, follow long-ago care regimens, and are not scouring the Internet or at BCO to learn what's going on in LE? Our provider community is letting these women down by not talking and asking about LE at the time of myriad routine visits for normal reasons, such as the annual gyne visit.
Jane Armer made a compelling case for early symptom surveillance, specifically paying attention when a woman's arm measure changes by 5% or more, and getting her into follow-up LE evaluation. I raised my hand to remind her (respectfully...that woman is awesome!) that she is speaking to the choir--every person in the room would respond to a 5% volume change in all the appropriate ways, but most of our MDs and surgeons would not know 5% volume change if it slapped them in the face, because they are not measuring and they are not asking and they are not referring--early, or not so early! So I asked how the early surveillance message was going to escape the LE community walls and become provider practice. Jane and Electra talked about that frustration and the hope that bringing some key studies into the medical and payor community limelight will start the discussion. The very good news Jane reported is that apparently in some months, there is going to be a meeting of the American LE Framework and a lot of third party payers, i.e. insurers, to start that very discussion.
Maybe Tina, Becky, Ohio4me or vlnrph will recall the timeframe that Jane mentioned for that event. It would be a good place to organize that flashmob of LE activists! (We need an official tune--an anthem--to blare at that event. Any ideas?)
End of rant!
Carol
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Carol, the Andrea Cheville paper on hand protection with sleeves does say if a woman has established LE, and the sleeve does not make the hand swollen, they can, with caution, omit hand protection--as long as they carefully check on the hand.
Jane Armer doesn't wear a glove, but she does wear a sleeve.
One of my favorite articles, is by AW Stanton, and it argues that subtle antatomic changes will often precede overt swelling--forget the 5% volume increase--look for smoothing of boney prominences, less obvious tendons, whiter skin color and if you feel--often the skin feels fuller.
The full article link is on SUSO. I think it's on the Essential's page, and I can get it.
Hope the ALFP meeting is productive, and I'd love to join the flash mob.
An anthem. Need to work on it. KMMD has Breathe on her signature--a link to youtube.
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Kira, thank you for the reminder that I should re-read Andrea Cheville's paper on this. When I was first diagnosed with LE, the nurse in that clinic told me that getting LE in the hand is a very unfortunate development, because it's hard to treat. That stuck with me, and I have never deviated from the program of wearing hand protection when in a sleeve. Maybe I'm too fearful?
Today I had a most interesting flight on my way home, because the woman seated next to me asked about my sleeve. She asked if I had LE, and I confirmed that, saying that she was in the minority of people who actually know about LE. Then she showed me her swollen hand and explained that she got LE, in her hand only, two years ago--and that was two years after mx/SNB. I asked her if she ever wore compression, and she pulled out a glove and put it on, saying she had a sleeve but it was in her checked bag. She said she rarely uses either sleeve or glove, because after being very compliant for six months or so after her diagnosis, she never had any fluid reduction so just feels she has to live with it. I asked about her treatment--a few sessions of MLD, and never any wrapping. She explained to me that she believes it was a scratch from one of her cats that triggered her LE, and that she worries about living with her cats for that reason. I asked her if she ever got cellulitis, and her answer was: 'what's cellulitis?'
This story tells so much of what is so very wrong in post-breast-cancer care, and in LE treatment. This is a very intelligent woman, a corporate executive, and no one gives her even enough patient education to know about her cellulitis risk? Or tries harder than a few MLD sessions, and never tries wrapping? She does not recall ever being given any information about LE risk reduction, either.
It was a pretty long flight, and she was all ears for some information I could give to her, and I have just sent her an email with essential resources, SUSO being on the top of the list.
But geez am I steamed. This Do-it-Yourself LE discovery and management has got to stop.
And I'm so glad she asked me about my sleeve!
Carol
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The box my sleeve came in says to wash it daily. Do most of you actually do that daily?
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Ginger, On clean days (I haven't gotten dirty or broken a sweat) I will often skip washing my sleeve and wear it a second day. I do not go more than two days though, because my sleeve seems to lose some of its compression. I can seldom get a second day out of my gloves though because they get so dirty.
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I'm afraid of a second day sleeve giving me cellulitis, although that is probably paranoia on my part. That is one of the many reasons I have more than the two sleeves the NHS allows me every six months (I am living in the UK), I want to be able to NOT wash my sleeve at night and still have a clean and dry one to put on in the morning.
And, Carol, I too am outraged by the mis-information, non-information, slovenly attitude of the medical community to LE. I only know what is and what isn't by what I've picked up on this site and SUSO, and that is a pretty half-assed way to get treatment in the twenty-first century. If I had diabetes no one would give me a leaflet and some syringes and tell me to go away and get on with it (God willing, maybe a diabetic could give me a hair-raising story of diabetes care. I know that medicine hates cronic illness...)
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I have always worn my glove at first then a gauntlet with my sleeve. My therapist recommended it at first to prevent fluid from going into my hand. She now says I can go periods without it if I want as it appears I will not get fluid in the hand. She still recommends wearing it during exercise, heavy lifting, etc. She says I should wear the glove during flights. In heat the fingers on both of my hands swell-always have (ankles too). Interestingly enough if I am out in heat and have on my glove the fingers on that hand do not swell. So maybe in heat and flights I should have gloves on both hands!
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Carol,
I just saw your post: this is ALL too common and deplorable. This woman may not know how lucky she was/is to have sat next to you.
Binney and I have become aware of all sorts of horrible marketing in the LE world, of disreputable therapists who are marketing their high pressure pumps, a therapist who is LANA certified but gets kick backs from pump companies and got an on-line "PhD" and is out there on youtube as "Dr" shilling for impedimed and this other therapist's pump. And I was invited to a seminar, where Kathleen Francis is speaking with these woman.
These therapists in question do NOT believe in CDT. They don't believe in compression wear or MLD, just pumps. And they have financial incentives to push their beliefs.
So, it's hard enough to get well trained therapists to go the "whole nine yards" and teach bandaging, and reduce volume and get decent compression garments, and there's this whole movement in the LE world to sell devices that if running up against good care.
My hand swelled first, and I have to wrap every darn night if I want to keep it down. I have custom gloves and wear them periodically during the day, but as the fluid has collected by night time, I wrap with "carrots" of gray foam and lots of gray foam over, and have a fair amount of compression on the hand.
If I had not found my amazing therapist, and actually the woman from Mass General taught me the gray foam wrap for my hand, and had me "put your night garment in the sock drawer" as it wasn't controlling the finger swelling--I could easily have given up in frustration.
First we need to get good CDT and while we're at it, we need to shine a light on these disreputable "therapists" who are trying to make money on LE patients by pushing their harmful pumps and diverting money to bioimpedance over treatment.
ARGHHH.
And this is not the grrrrrrr thread.
But, we are strong, united and informed, and we will keep getting the message out. And helping women through this forum and our educational efforts.
off the soap box now.
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Carol, I'm so sorry for this woman--she's really been shafted on LE help and information. But it's a beautiful story, and like you I'm just delighted that she spoke to you about it. Clearly she knew she needed information, and she found a wealth of it!
I used to go two days between washings, but then we did some research for StepUp-SpeakOut about glove/sleeve hygiene, and that convinced me. Plus, of course, the washing restores compression, so we can lose ground wearing them two days without washing.
Here are some other ideas for hygiene with compression garments (none of this LE stuff is easy!
):
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#GLOVES_AND_HYGIENEAh, weekend! Everybody stay well!
Binney -
Kira, you are definitely onto something regarding the pump-pushing. The woman next to me on the airplane also told me she'd been given a pump during her ummm...brief course of LE 'treatment.' And now it's in her closet.
Another woman I spoke with once said that as soon as she got into LE treatment, the LE clinic encouraged her to get a pump, telling her that her insurance would cover it, and as it was her big surgery year, and she had therefore met deductible and max out-of-pocket, why not get one, as it would cost her nothing, just in case she might need it sometime in the future. She tried it a few times and it is...in her closet. So what's worse than prescribing pumps in lieu of more comprehensive therapy, is to prescribe a pump with little added therapy and then neglect to follow up with the patient to even know if she's using it, let alone if it has resolved or reduced her swelling.
At the LE Summit, Dr. Feldman made a compelling case for being cautious in prescribing pumps only after other therapies have had unsatisfactory results. And I don't think he's a fan of abandoning follow-up. And he acknowledged that these days, he prescribes pumps a lot less often than he used to, which he implied is because he's been following his patients and now sees that a good course of CDT is usually much more effective, at much less cost.
I wonder if the seemingly common poor long-term follow up is because of the hoops we have to jump through to get another referral to the LE therapist. After just six weeks with no visit to my CLT, I have to call in to my doctor to ask for a new referral. That gets old; there's often a wait before she gets the message and takes action, so I sometimes have to make repeat calls to the LE therapist's office to see if the referral came in, before I can actually schedule my appointment. It's easy to see why it's easy to put this process off. I'm guilty, too--haven't been seen for a while, although I'll be there Monday for a check-in and measures, but I know perfectly well that I procrastinated because I was busy and didn't want to engage in a series of hoop-jumping phone calls.
In another thread, we ask the question of what to say when someone asks about the sleeve. It's intrusive, yes. We don't want to get into it, yes. But you never know who's asking, or who they might know who has BC or is a survivor. Or has LE and doesn't realize that's what's going on.
Carol
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