GRRRRRRRRR I HATE LE..........
Comments
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I'm interested in how to use the paint roller too? I am assuming a small sized roller. I did not see this info before. I suppose I could search through all the past posts, but please have pity on me.
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njbhwgirl, I'm so sorry for the loss and the sad feelings on Father's Day. You have a whole lot of garbage to deal with, and still you see the bright side--"no cooking!"
Makes me insane when insurance doesn't cover LE therapy, as they really have to, by Federal Law, the Womens Cancer Act:
http://www.dol.gov/ebsa/publications/whcra.html
It specifically says LE is covered, if caused by breast cancer.
Hang in there.
Kira
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There is an elderly woman on our moshav who was in a car accident a few months ago. I was at her house today and she was saying that the leg that had been broken was hurting and it was swollen again (mostly the foot is swollen). She said she was told it's "lymph-something, having to do with the lymph system". She has an appt with the ortho doc tomorrow so I told her that if they want her to see an LE PT I would give her the number of the one I use since 1)she's excellent and 2)she speaks English which is essential for this lady. I told her about the MLD, bandaging, compression garments. She was glad to hear there is treatment for it since she's in pain. I told her to drink a lot and keep it elevated. I think I was the right one to see her today!
Leah
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thanks for the link Kira. I wonder if that includes the sleeves and garments required for tx of LE? I still have to turn them into the insurance to see if they are covered.
Woke today with pain in the arm....crap crap crap. It has that telltale feeling of heaviness also so anticipating a week of possible wrapping again whah whah whah...that is my crying with you ducky!! I hate this so much! I have worn my sleeve everyday with my glove and wear that thing at night too...
Maggie
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Paint rollers can help with truncal, but it's important to stroke in the right direction. (This is a clean, new paint roller, of course, not the one out in the shed that's stiff and prickly with that lavender paint from doing the bathroom three years ago
). I use a regular size roller with a long handle for my back, but one of those soft trim rollers works fine for the side. I only use it for places I can't reach, or for when my opposite hand wears out (since I'm bilateral).
For doing your back: unilateral surgery, stroke to the opposite axilla in the order you've been taught (after clearing the nodes, of course.) Bilateral, stroke toward the groin (after clearing the groin nodes).You only roll it in the direction of the nodes, then LIFT it off your skin and start back again for the next stroke; don't ROLL it back.
Did any of that make sense?
Binney
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Binney- Do you use a foam roller or those soft fluffy ones or does it matter?
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Kate, I use a foam roller, but I can't imagine it matters. What matters is how gently you do the whole thing. Kitten-petting gentle!
Binney -
Binney - that sounds like a very interesting idea - I think I need to know a little more on the actual MLD. My LE therapist gave me homework - and said not to get into anything else yet because I could make the whole situation worse before I understood the whole process.
But it sounds awesome!
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Is vacumning with your bad side a no no?? I think I boo boo'd. How do I get the swelling out of the breast? Compression and activate opposite axillary? and what else??? Oh my!!!
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Binney. I haven't used the paint roller yet. For truncal, Do you go across to the unaffected side of your back first and then down to the unafftected inguanal nodes. Are you using it on all areas you can reach with it. A lesson please. Do you have it posted at SUSO site?
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Binney: so sorry I am ignorant... trying to follow the procedure.. can't figure it out. okay so mine is on the left side of my body. Do I roll down, up or towards the middle of my back. I don't want to aggravate the situation. Not sure what you mean about groin? sorry
Kira; thanks.. but had a uplifting moment today. My son is Army reserves. His unit is in NYC close to NY mets stadium. He and a few friends went to the game last night. The team let them in for free and gave them upgraded seats. They also got free food and drinks from stadium as well as other people in the audience. How NICE! They also got recognition from MC and got standing ovation from crowd. I could cry!!! How wonderful. My son joined army reserve to help pay for college since we are down to one paycheck. He is scheduled to go to Afghanistan in October (SIGH)... and this was just so nice to see fellow americans wishing him and his buddies well... I just wanted to share this little story. It made my day
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Oh Binney I see above you have given us the directions how to do . Thank you, you sweet thing.
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Tina: I have the gummy bear implants. Thanks for your ideas about bras & camis.
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The direction of MLD really needs to be decided by an experienced LE therapist, because we're all different (areas of swelling, scars). Because I'm bilateral, I clear the front first, then side (down), then back (downward to below waist, then around to groin. What I can't do myself, even with a roller, is the deep finger-circles near the spine, so DH does that (but only when I'm flaring, because finding a time when we both have time to do that is tricky
).
If full therapy is financially out of the question, perhaps an arrangement with the therapist to teach you as much of MLD (and wrapping) in as few sessions as possible would be an option? If so, bringing someone along to take notes and record the process is a real help. Some therapists are really understanding of this and will work with you to give at least that much help. It's not ideal, but it can really help.
Another thought is, if your insurance says they don't pay for it, try calling and asking several times. Often the answer depends on whoever answers the phone, and since most of them have never heard of LE we get a "no," even when there really is help available. A case manager might help....
Why is it so stupid difficult to get good help?!!
Sigh!
Binney -
I am not sure if Lane Bryant sells them or not. However I would think so since they are both owned by the same company now. If not get them to order it for you to try.
The paint roller is also a good way to get your kids involved. My daughter loves to do my back when school is not in session. She thinks she is helping me and she really is but I don't know how much help it is. She is gentle and just wants to help mommy.
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I finally took the time to do my MLD tonight. I have definitely not been taking proper care of myself, but maybe this means I am getting back on track. I took my time and did it lovingly. Usually I rush through it or don't bother at all. Silly. It's not like it takes that much time or is that much of an effort. Now let's see if I do it in the morning. ;>)
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@GMA foley...I do wear the belisse lined with fabric from the Solidea silverware abdominal band. I chop it up and stick it in the LE side of the Belisse.
I have tried all the sportsbras and stuff, and really the above is all that works for me consistently.
I am DD-DDD
(And yes that is post reduction
)
By the way, it was a nice dry weekend in beantown. I did ok not wearing my sleeve most of the day. I did go back to the hotel once a day and put it on for 1/2 and hour.
I hardly felt any swelling, which is sort of a miracle, with 12 hour days!
The only issue was I had some sort of irratation in the web of my hand, and it showed up on the trip there. I used neosporin on it and it got better.
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OK Ladies can I vent about something other than LE? I need to tell someone...
A friend, that we let into our house awhile, to get back on her feet... Moved out about a year ago when I started cancer treatment. We talk off and on through the year but it was like she was avoiding me... NOW I find out on FACEBOOK - she Got Married this weekend and didn't even tell me!!!!!!@ @#$@#$@%@#$% I am sooooooooo hurt!
I can't believe she couldn't share that with me.... and I find out on FACEBOOK!!!! It just made my day worse, it hurts soooo baddddd.
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oh gmafoley...good riddance to bad rubbish...It is aweful when someone that you went out of your way to help treats you so horribly. All I can say is it is probably better that she is out of your life now as you just do not need such selfish people aroung you. {{{HUGS}}} to you and steam about it all you want. tomorrow she will be a fart in a whilrwind!
Maggie
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Gma...............more important "fish to fry"...................drop her like a bad habit.........not worth the thought your putting into it...................with friends like her, you don't need enemies..................you have us girlfriend, and we will always be there for you.....................hugs, and move on and take her "out of your life"...............
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Moving on... just had to vent and cry...
Now to explain to my LE Therapist how my breast got all swollen this weekend
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Losing a friend even if they are a dork, well, it hurts. Even though you don't need her in your life it doesn't lessen that hurt. She however, will be the loser in the end. Hugs GmaF.
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Good Day at the LE therapists - I did find out for sure, which you all have been telling me... I need a sleeve for flying even if the breast is the only thing involved at the moment .. He referred me to a medical supply an 1.5 hours away because there is none in town - said I could probably just be fine with the redi-made sleeves because there is no swelling... and also need to find something for night time - been swelling in the breast at night :P - any suggestions from the Peanut gallery on where to start?
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@gma I started as a breast only gal to.
It's odd, at the beginning el boobo responded really well to treatment.
Now it's tougher to manage but the arm is doing well.
My arm first appeared while I was moving as an isolated bubble, nobody thought was LE.
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My LE came on very early ...........shocked everyone........they all thought I was "looking for problems"...........soon found out......I was right, they were wrong..............LE can come anytime...........I was about 4 weeks into Rads when it happened to me..............funny thing is ......I asked right after surgery........is there anything I can do to avoid LE.............I was told.....its too soon.......and by the time it was "ok" to do arm exercises, it had already "set in"..............oh well...........life goes on.
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Feeling a little sick to my stomach this morning - guess I need more water??? SE from LE Therapy??? Any suggestions on Precautionary sleeves for air flights? As I said earlier, mine isn't in the arm at the moment, just the breast.
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Ducky, my LE came on before I even started radiation, came on from holding my arm still over my head for an hour during the simulation I think. I had cording before I even had surgery though. I am back in LE therapy too. I thought I was well managed and wouldn't need to go back, at least not so quickly, I just finished in January. I guess the warm weather is not good for LE. And I suppose the plane trip I took, getting in a hot tub and loosing my sleeve weren't very good either. The problem area was really my hand before. Now there seems to be swelling stuck just above my wrist. The wrapping seems to be trapping it there. My PT has me wrapping my lower arm over my tribute instead of wrapping completely. Hope this works or I'll be back in "intensive" therapy.
GMA Foley, I haven't had any stomach issues from LE. I don't know if anyone else has.
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@Kay - Just thought with all that fluid moving around and definitely out - many trips to the bathroom since the MLD yesterday LOL.. was just wondering.. thank you for answering my question.. I get up early and try to eat dinner early, the tummy upset might have just been eating later last night...
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GMA. A few people on the threads have reported nausea after LE treatment. I hope they post in to give you some experiences. Take notes on how long it lasts. If it is persistent then maybe it is flu bug.
Yes, you may go to the bathroom alot after MLD treatment and this is a good thing. Water drinking is so important to wash out fluids. Try any carry a waterbottle whenever you have no access to water especially in the hot months ahead.
I am glad you are taking care of yourself.
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Gma, upset tummy is fairly common when you're just starting treatment. It should ease as you go along. There are some theories floating around about why that happens, but nobody knows for sure. Icky, but it doesn't last!
Be well!
Binney
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