GRRRRRRRRR I HATE LE..........
Comments
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Kate, Is it below class 1 (20-30mm)? Because there are all sorts of options in class 1, and a good fitter knows how different fabrics contain and compress.
Isn't it frustrating to be eagerly awaiting the garments you never wanted to wear?
When my gloves come, I hesitate before I open the box.
Cookie: a purple hand, well, that is a statement...Maybe it will become less distracting.
I'm training for the Klose CLT class, and watched Kathleen Francis' on-line course (I've seen it before) but tried to imagine her as your doctor: she's kind of matter of fact in the video. Now I remember that I did meet her at the last NLN conference, and she was nice. But a fellow conference attendee is different than your doctor.
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Kira- I'm not sure but I thought she said it was class 1. I put a call into the fitter a few days ago but haven't heard back from her. All her calls go through the oncology gift shop so think it's hit or miss if she gets her messages. I can't believe such a big hospital doesn't give her a separate phone line!
Have any of you joined Army of Women (armyofwomen.org)? It's an organization that matches medical studies with cancer patients/survivors in hopes of learning ways to prevent BC all together. Right now they have a study to learn about the impact of BC surgery on long term health and quality of life. It's being conducted by Duke University. Here's what it says-
"We need women in the United States who underwent surgical treatment for ANY type of breast cancer, including LCIS, DCIS, and Stage IV metastatic breast cancer, to take part in an on-line survey designed to explore the impact of breast cancer surgery on long-term health, quality of life, and satisfaction with care. A research team at Duke University will use the information collected from the survey to help guide surgical decision-making and optimize the long-term health of women newly diagnosed with breast cancer."Hoping that LE will be addressed or there will be somewhere to add information. Maybe if they realize what a big factor LE is more research will be done. Big IF I know but couldn't hurt. The survey takes about 45 minutes and you don't have to do it all at once. Just thought some of you might be interested who haven't already joined this wonderful organization.
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Hi Kate33 -- it's such an annoying feeling not being able to do things because you don't have a garment. It sounds like your fitter is doing off-the-shelf garments. I only know of one sleeve that is below class 1, the off-the-shelf Jobst 15-20 mm Hg sleeve. It only comes in 1 length. Unfortunately, to the best of my knowledge, no company makes custom 15-20 mm Hg garments.
As Kira says, good therapists and fitters know (and it has been my experience) that the "official" pressure of a garment is only part of the story. For example, my class 1 custom juzo soft sleeve (a circular knit) feels great, but I find my class 1 custom juzo helastic sleeve (a flat knit) uncomfortable. The first fitter I used only had Jobst brand, but I learned through this group that there are dozens of options. In my opinion, if your fitter only offers one brand, you might want to look for another fitter.
The StepUp-SpeakOut site has a that page lists a lot of different types of garments. Unfortunately, I don't seem to be able to past a link that works, but here is the homepage
http://www.stepup-speakout.org/
- KS1
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KS1- Thanks for all the info. I do know my LE PT recommended off the shelf from a cost benefit but might not be worth it if I can't get the fit just right. The first ones they gave me (that were too tight) were Mediven. Not sure if that's what she ordered again or not. I had no idea that sleeves with the exact same numbers could feel so different. Sounds like this is definitely a trial and error kind of thing. I'll check out the types on SUSO. Thanks again!
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hi Kate: you don't have to wait.. i just got an off the shelf sleeve, till my customs come in, they play around too much..
i have been able to get a 15-20 in both gottfried, and jobst, both gloves and sleeves.. to me, if the sleeves' too long, they'll bee too much compression around the wrist. that happenned to me, with armcare.. i had it altered.. but they aren't compression, per say. with compression, its way imp!!doesn't sound like your fitter is giving you good advise, to me.,... edited to add the off shelf was a jobst...3jays
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It's lavender, was hoping more for bluish/periwinkle. I guess when it gets really hot I will like not wearing beige.
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Maybe it's just my computer, but I'm really not loving this new format. I'm finding it awkward to search through and I'm far less inclined to come here, as a result. Is it just me?
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Nope, me too. I could just click on the site, and see who posted before, and now it's a royal pain, hard to navigate, kicks me out all the time, and the posts are kind of harder to read.
I guess the good news is that I'm on the computer less.....
The bad news is that it is "change without progress" and interferes with our on line support and sharing of knowledge.
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kcshreve- Nope it's not just you. 1Athena1 started a thread called "I don't like the suburbs" because she said that's what it felt like- too much space and setbacks. Said it felt more like a day planner and I agree. I never understand why they fix things that aren't broken.
So just spent the afternoon going through all my summer clothes and sorting the ones that don't work or feel good on my arms. I've got quite a pile going. Definitely going to have to rethink the way I shop from now on.
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Funny, but I'm not finding the new format challenging at all, but maybe that's because I didn't have years invested in using the older version. I am really happy with improvements to the mobile version, because with all my work travel, I'm using a smart phone to access the site more than half the time.
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Carol, are you feeling better?
Kate, I do this layered thing. I feel like Mr. Rogers with the cardigans...
I just scrolled down the site, and they only show the last post on a single topic in the forum. Before I could see all the topics, now I have to hunt, and I don't: I love it--the suburbs.
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Kira- Wow! I hadn't realized it was like that with the topics. I wonder how many newbies are being overlooked who need help? That's something that should definitely be changed back I think. I bet a lot of women are not getting responses to their new threads.
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cookie: my purple was much darker.. did they order "lavendar " by mistake ? ck your paperwork.. i always ck when they order, and match it when i get them.. mine are def darker!!!3jaysps i'm getting used to the new changes.. i have to do a few things new to get places.."back to the top" isn't working for me yet, but they've assurred me they're working on it. i just drop down, and hit favorite topics, and i get where i want to..
i do, like that this now drops down 2 lines, when you hit enter, easier for me to read posts.....3jays
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Kate, when I go to all topics, it ony shows me the latest post. So sometimes, before, I'd see that a newbie's post had gotten overlooked, and I could see it at a glance.
Also, if you search for a thread to bump, they've edited it down to the first couple of words, make the search hard.
It does keep me off the site, which could be a good thing, but still...
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I am working on getting used to the new format too. We will all get used to it then when it changes again we will complain and want this one back! Progress!!!
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Can't stand the new format, for all the same reasons listed above!
Will join the "armyofwomen.org" - thanks for that info Kate.
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Do we need to write to the site's moderators - - or did someone do that? I used to be able to scan various threads in no time at all. Now, it's so cumbersome that I am very limited as to which threads to scan, and it's much harder. It was this site which helped me with my very steep learning curve when I was diagnosed. Because it was so simple to navigate, I got lots of answers quickly. If I were new now, this format would be adding to my burden rather than relieving it.
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KC, there is a thread, at the very end, where you can write the mods about it. I had to search and search to find it....
Supposedly they're tweaking it due to comments.
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KC & Kira - boy I sure hope they are going to tweak the site, as I couldn't agree more. Used to be able to get around much easier. Almost a pain now. Only really visit those threads that were marked as favorites - missing new topics, because the active topic button, it's just not as inviting as the last one.
I did complain to mods when format first changed. Never acknowledged my note, so thought they do not care
so wish they would also add a "like" button to each post so that you can softly support each individual - sometimes, it is hard to remember all the people you want to agree with when you finally get down to the 'compose' section. 0 -
DM13 - I'm like you. Now I only check the threads I had already selected as favorites. Sorry to miss out on new ideas, but too much trouble.
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With this new format I somehow feel a little more isolated with my LE. I find the threads are more difficult to find unless they are in Favorites.
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Boy this sucks! I hope the mods are reading this!!!
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kind of an odd question...does anyone ever take their garments off in their sleep? Every so often I wake up and find I took my belisse or my sleeve off.
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I seriously need a question answered.........googled, but can't get a straight answser.............has anyone every began with "arm LE", and after a while in my case close to a year realize your leg is getting very swollen...........I am scared to friggin death that this LE has moved down..............my leg aches, but then I have a bad back, normally swell a little (salt)............and I'm on a couple meds for the mild heart attack, which can cause ankle swelling also.........................however............this is new, and it was gradual............the swelling goes down slightly, but once I'm on my feet..................WOW...............comes back with a vengence...........would love to know can LE go to lower extremities once you have it................thanks gals.
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@ cookie - I have been known to take off my CompreeSleeve in the middle of the night...I think i remember ripping off a breast binder once or twice as well.
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JO my back has been itchy...hummm may have to have hubby do some mld on my back
My gripe today...my right foob is over a cup larger then the left due to LE...my bra's and compression cami's always shift over to the right side, feeling and looking wonky! I am tired of having to adjust my clothing all day long...GRRRRRRRRRRRRRR!
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JO - that just makes me sad for both of us... I had BMX with implants and technically should be the same size. I cannot image stuffing the other side to match (it has a touch of LE too just not as advanced). I do notice that I do not have as much of an issue with sports bras but since I have to dress professionally for work, there are times a sports bra does not work
another GRRRRRRRRRRRRR!
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I have LE in my right arm after mastectomy. I have a Class II sleeve and glove and wrap at night. I am having the other breast removed because of a high risk lesion and they will be doing a SNB on that side. Where will they put the IV? Does having a SNB on the left side mean that blood pressures, blood draws and IV's will be a no no on either side? Any advice for preventing LE on the SNB side?
Thanks!
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Ducky, I know Kira and Binney have talked about leg LE after arm or truncal LE. I am sure they will have some thoughts on this. I don't know what to say other than grrrrrr, and that you certainly don't deserve more worries.
The paint roller trick is supposed to work great on the back for MLD in spots that are hard to reach. Just a light rolling downward motion helps move the fluid.
O2B, when I had my implants and developed LE, none of the compression bras with cups fit right and irritated under/behind arm area. I ended up wearing compression tanks which flattened my profile completely, which was so depressing. So, the point of having implants was ??? Grrrrrr, implants and truncal LE are not a comfortable mix either.
JO, I had very good results with my scar tissue when I went to a myofascial release therapist. As long as the therapist is gentle and understands LE, you actually might have an improvement with drainage.
And now while I am mentioning that, O2B, my therapist worked on my chest and implant capsule area and that had a positive result on my truncal LE, too.0 -
Thanks Tina...I had myofascial release but I am not so sure of the therapist...I'll look for another, hopefuly more qualified. It is frustrating that the only way to 'feel' comfortable with the truncal LE also causes us to lose projection...why did I get these implants again?
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