GRRRRRRRRR I HATE LE..........
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Leah: my le therapist oked sleeve covers like binney showed.. (thanks binney) but warned.. no compression on top Or bottom, either.. mine are more like leg warmers( arm warmers) but are lacy, etc.. like you said. i got black gloves and sleeves this time.. can't wait to see how they look together!!!
i also have been known to go to the $ store, buy a pair of trouser socks (they also are stretchy loose ) lace, and wear THEM over my old beige sleeves.. again, no compression anywhere... did you email lymphdivas to see if they'll back order for you??? 3jays
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Thank you all for your comments on the pressure issue. I just now had the opportunity to watch the video that Binney4 posted on the last page. It wouldn't work on my Mac. All I can say is "Wow." I need to watch it a couple of more times to comprehend everything (didn't get the best grades in Physics!
) But I found it really, really helpful. I had no idea that pressure was that big of a deal. I've since learned that while the big tornado was about 20 miles east ... about 5 miles south we had an EF2 tornado. So the pressure change had to be crazy. One of the things that I didn't understand in the video was if the pressure is less the further up you go in elevation ... does less pressure make us swell more? So we need tighter compression the higher in elevation ... ??? Sorry for the stupid questions ....
The last frontier in my LE world is flyiing. I am so, so scared to fly. My arm so badly the night of the storm ...If I was that affected pain-wise in severe storms what would it be like if I flew? Once I can get back to a therapist and learn to wrap I'll feel better about it. Until then I've grounded myself.
It's not worth it to me. Thanks again, Binney for posting that video. It was really, really helpful.
And thank you to all of you who took the time to respond. You all are my LE lifeline.
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Dawne, yes the higher elevation has less pressure on our body, the less pressure the more we are likely to swell, that is where the compression garments come in play, they help make up the pressure difference on our skin as we go higher in elevation. as an example, I live at 1250 feet above sea level, if I travel to Boone (18 miles North) where the elevation is 3300 feet above sea level, I do notice my hand may swell more.
Sheila
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I have punched myself probably 10 times!!! LMAO I feel like an idiot!!!
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Does anyone know how I can get help buying sleeves? I've called the American Cancer Society, and a couple other places and they say they are out of funds. I'm on state insurance and they don't pay for sleeves. The first set i got cost me $210. Does anyone know of a website i can get them cheaper? Also, i need a gauntlet with fingers. i heard of one i think it's called Farrow??? that you can cut the fingers to size. does anyone know about those? Sorry, so many questions. Considering Lymphadevas also, can i get some opinions on those? Thank you all ahead of time!!!
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Julee, A while back, I did a google search to see if I might find LE garment resources around the country. I found about thirty, and just by googling. I just checked my list, and unfortunately none are funds specifically in Oregon, but that does not mean this does not exist. One strategy is to call your regional Susan G. Komen for the Cure chapter and ask them if they have funded any lymphedema clinics or hospitals for compression items and LE treatment. When I was searching, I found quite a few press releases announcing these awards. One LE clinic in my area has been funded to help 30 or so women each year.
Also check out the NLN's garment fund, which has a 'catch' to it, but still worth investigating. The catch is that you need to apply for garment assistance through a clinic or therapist who is a NLN member, so that's the first question to ask of your therapist.
And here's a long shot: in Washington, MultiCare Health Foundation has a Breast Health Assistance Fund. By any chance is this a multi-state organization that might also be affiliated with a hospital or LE clinic in your area?
I really was surprised to find evidence of garment and LE help in 21 states, plus several resources in Canada and in Australia. I did not verify any of it by calling or emailing, just made a list of what I found. As you learned, some resources may be out of funding. But I think that hospitals and other providers may have resources they do not generally advertise--worth making a lot of phone calls, no?
I posted my garment-fund list online, through Google Docs. It is visible to anyone with this link:
https://docs.google.com/spreadsheet/ccc?key=0AtSa_oHjzz_8dE02eTZUV3Y3ZVVBR2JaRVJGT3BCNFE#gid=0
If you find a resource in Oregon, (and I hope that you do!!), post it here and I'll add it to the list I'm keeping. Also, anyone looking at this who checks out the list--if you find a source does not exist or is out of funding, post or PM me with the info and I will update the list.
Good luck, Julee...it really is mortifying how expensive the sleeves and all the other LE claptrap are.
Carol
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Hi ladies,
I don't think I've posted here before but I read this thread almost daily. I was diagnosed with LE right before Christmas and have been going to OT ever since. My therapist is not LE certified, but has lots of training and is the closest to a specialist in my area. I think she is great. I had a lumpectomy a year ago, with 3 nodes removed-all negative. My BS said LE was not a risk for me. In fact, I had seen him just 3 weeks before I went to see OT. Originally I thought I just needed some stretching and strengthening (which I did), but soon discovered the benefits of the massaging and stretching. My LE is in my breast, not arm, near the surgical site, as well as in the armpit. I also had pain underneath the breast, probably from lymph pooling there as it tried to reroute. I don't wear a sleeve, but have quit wearing a bra and started wearing tight camis. I finally got a compression cami today, but don't know if I will keep it. A bra is on backorder.
I just about ended OT, but felt like I still needed help with the stretching. I can do the massaging myself, although not for 15-20 minutes like they do! I started going once a week instead of twice a week. Last week after my appointment I felt a cord or band in that sore spot under my breast and pointed it out to the OT. She was very surprised and said she had not ever seen cording in the breast, only under the arm but was certain that's what it was. she did some stretching and pushing and pulling and after about 10 minutes there was a slight pop. Didn't feel it, but could hear it. Honestly, I thought it was her hand or knuckle! But the tightness eased up immediately. Tonight i am still sore (from all the pressure I think) but the cord seems significantly reduced. I had a hard time even finding it.
I guess I am just wondering if others have experienced cording in the breast and if so, how it was treated. Will it go away? Is there anything I can do myself? I was so relieved it wasn't a lump (I was pretty sure it wasn't, but geez-there was definitely something there) that I didn't think to ask some of these questions.
Kristy
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Good Morning All. Yesterday my oldest son Max asked his girlfriend to marry him and she said YES! Now how can I post a picture of her?????
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Kristy, no one seems to have answered you: you can definitely have cording in a breast, it's usually called "Mondor's disease", and the slight pop likely means that the cord snapped, and it should give you complete relief. You don't try and deliberately break cords, especially early on, but if they pop in the course of mild treatment, it should feel better.
I'm going to put in the link to AWS:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Also, try searching the forum for mondor's disease.
It's been a few days, are you still sore?
Onward: I use photobucket and put the link in the green window icon. Congratulations!
Kira
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Onward, Wow, what a wonderful report! Isn't it fabulous when such great life events focus our attention on a wonderful future, instead of the crappy past that brings us all together here? Bask in it!
Carol
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Congratulations Onward.
Down LE day for me today. One of my colleagues expresed an opinion about establishing workflow to get around things I'm not doing because of the LE and I totally got my feelings hurt. Can't blame them, just hate the reminder. Down with LE for sure.
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Kate: You're too kind: I actually DO blame them--get real, we age, we acquire disabilities, you're not shirking your duties, you have physical limitations.
You are a dedicated, hard worker and it totally ticks me off that you got your feelings hurt.
LE sucks/stinks/rots--and why the heck does it feel so shameful??? (to me, that is)
You are amazing, and any contribution you make to your workplace enhances them.
Kira
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I occasionally lurk on this thread due to mild LE in my arm and trunk after rads. I got lots of good info re: truncal LE (something I wasn't aware of before the dang dx). Now I have a different LE issue. I recently had a total hysto due to endometrial cancer dx. and now I have leg LE. I have an appt with my LE therapist on Friday. I was wondering if anyone has any suggestions to assist me on this front until my appt. I had an ultrasound last week to make sure it wasn't a blood clot due to the fact I'm on tamox. and it came on suddenly. TG it was neg. So now I need to learn to manage three spots on my body. It's only on one leg, and thankfully it's on the opposite side as my arm and chest problems. But ....GGRRRR
Any thoughts?
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Aww, thanks Kira. I dont know why it seems so shameful. Maybe because we keep it wrapped and "hidden", sign of weakness, not sure, but totally get that feeling too
Oh Betsy that just sucks. I'm sorry to hear that
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Kate, great explanation of the shame. Wish it wasn't so, but it is, for me.
Betsy, quite a number of women on this forum have developed leg LE as well--likely some genetic predisposition. I bumped a thread for you, but I think there were posts about it in this thread. I guess you should elevate and consider compression stockings.
And last, but not least: IT'S BINNEY'S BIRTHDAY!!!!
Happy Birthday Binney--your kindness and generosity have touched all of us. Hope you're doing something very, very chocolate.
Kira
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happy birthday: BINNEY!!!!3jays 0 -
onward:just go to photobucket, sign up. then, there's a part you'll see that says "download from your computer.. it sends you to you puter.. click select, and it'll put in in a folder on photobucket. then, click on the picture, and do "copy" come back to bco and click paste. it'll ask you a couple of times to allow acess, hit that 203 times.. that'll do it!!!
congratulations, now, we want to see the picture!!!!!3jays
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Happy Birthday Binney you make a difference in so many people's lives! Thank you!
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203 times! Hysterical!
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BINNEY, you've been holding out on us!!!! It's always wonderful to have a reason to celebrate, and your birthday most surely deserves some balloon launching and confetti tossing!
Carol
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Happy Birthday Binney!
Leah
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Happy Birthday Binney!!!!
Best wishes for a wonderful day.
Trish
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Happy Birthday Binney!!!
Thank you for being there for me...and all of us on GRRRRRRRRRR!
WE TREASURE YOU.
BarbaraJo50
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Happy, happy, happy birthday Binney. Enjoy the brownies!!! Hear us all singing to you. Becky
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Happy Birthday Binney!!!
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Binney!! Hope you are having a terrific day. Happy Birthday! Do a kegel breath and blow out your candles!
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Happy Birthday Binney............just stopped by and saw its your birthday..........many, many, more dear..................hugs
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Happy Birthday Binney, have a big brownie today!
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I join in the choruses of HAPPY Birthday Binney. KS1
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Happy Birthday Binney. You have educated and encouraged us all.
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