GRRRRRRRRR I HATE LE..........
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One more day with this post MX drain and then I can get some serious LE exercise going. Been seeing a massage therapist three times a week for LE drainage since it's challening to get the left arm to reach the right side easily (or maybe I took the lazy way out). LE has been behaving the last two weeks - until last night. Didn't do anything out of the ordinary but lots of MLD (and prayer) helped. Then - I left the house this AM and forgot my compression sleeve. Hmm... I think the extra sleeve is going to find a new home in my purse.
I have one more week off and I promised myself I would learn to master wrapping. Need to practice today. I've been putting that off but I could have benefited from wrapping last night - I just plain don't want to do it.
Okay - now that I admitted I am totally resistant to wrapping it is now time to get over it.
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Ohio, ahhh...the power of committing to something in public!
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Ladies.......maybe i am giving my LE people a bad rap....................I have no doubt they are excellent in their field..........its just might be me.................all I want is a good fitting garment, something for bedtime, and be done with it.............I'm sure if I ;had all the right things to deal with it would be ok...................my LE. is not that bad, but it is LE just the same
My upper arm is not small......as I gained weight, so did it.........however, even when I lost a vast amount of weight, the upper arms flap like "batwings", so maybe that is the problem with them getting the right fit.............It is just such an expense, and I never mind spending money on my healthcare, and good food, .............but ...damn, when the healthcare isn't working.......................and the food sucks................I get angry...............guess I made a point huh...................off the soap box for now....................love you guys.
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MLD question - my upper arm is more swollen than ever before. It's never been 'real' bad but I'm taking it seriously.
The question - is MLD effective while wearing the compression sleeve? Just wondering for the future. In my mind, it seems like MLD is good with or without a compression sleeve.
I'm off to give it a try now and see (can't hurt). Just wondering if it's a wasted effort. I mean, when I fly I 'massage' my arm on the plane while wearing compression but I didn't have swelling to care for.
Look forward to answers - or will post my findings.
I am really trying to be patient with this post surgery stuff by tomorrow the drain comes out which is a good thing since I just lost my pateince. That tube wants out and is annoying me and now my swollen arm... No patience left for the day. Off to do MLD than Flexi then whatever.... I guess this is the time to learn to wrap. Maybe my arm knew I promised myself I'd learn to wrap.... I just know Little Martha (my arm) has a life of it's own.
Did I forget to say 'argh'?
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Awwwwwwwwwww Ducky....It will work out.Its gonna work out...just dont let it get you down....
LE is so underestimated...people look at me when i say i have LE and they say where?????If I say in the trunk they think im nuts.no one really knows shit about it except here....
Im gonna start PT once again but they told me to go to Norstrums(sp)ya can tell i dont shop there.but to get messured and fitted there....any suggestions?
Have I told you lately how much I hate LE?well I do!!!!!!!
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Gma, that typo would be funny if it wasn't just plain maddening. So sorry, but clearly just a brain blip moment for the lab person. Do tell the doctor about it. Sorry about the extra mammo, but that's going to be so reassuring to have. Prayers for continuing wisdom from your doctor--it's lookin' good!
Ohio, I asked my therapist that same question once. She said, "Do you mean MLD is more likely to happen if you can do it with your sleeve on?" And I admitted that was the case--why else would I be asking!
She said it's more effective if you do the massage skin-on-skin, because it's moving the skin that matters, but doing it with a sleeve on is much betteh than not doing it at all. (Partly, that's true because clearing the nodes and chest area is an important part of the process, and you can still do those areas skin-on-skin). So DO let us know how your experiment turns out. (We should all get honorary advanced degrees in medical research!
)Ducky, oh, how I hear you on all that! Expensive, frustrating, and so hard to get to a place where we can face off with the stupid stuff--not to mention staying in that place.
You have so much spunk and spirit--hang in there with this!August, and the whole next week here is temps above 110 -- GRRRRRRRRRRRRR!
Binney0 -
I got my stockette from my LE T. He wrote the word "NO" on it and said anytime someone looks at the arm to show them the "NO" . He had me laughing so hard I almost peed my pants LOL. On a serious note, he said to wear both the bracelet & stockette.
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When, I did go to the LE Therapist.....she said if you do NOTHING....at least do the MLD....and that I have kept up........just wear a gauntlet after that...SOOOOOOOOOOOOO many questions.....but I am getting better at it.....Liz
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Did MLD with the compression sleeve and saw improvement, not as much as skin-on-skin but I think it helped. Then went to Flexi for 66 minutes, then more MLD. LE much improved. Wrapped arm anyway cuz I promised myself I was going to practice to tonight. First time wrapping, only took 15 minutes and I think it will stay on all night! I'm calling it success.
Yeah, me!
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Ohio, I can feel that positive attitude coming from you, and it's really, really wonderful. It seems like you've come through the surgery with flying colors. One week 'til the LE Summit in Columbus. Do you think you're still on track to go? I hope so, because I want to bask in some of that positive energy that you are exuding!
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Ohio, brava on the 15-minute wrap--what a pro!
What are you doing to celebrate? We need to pass around those brownies with the thick chocolate frosting!
DON'T do the Flexi with your day garments on! It's okay to wear a length of stockinette under the Flexi garment to help keep it clean, though.
Be well!
Binney0 -
Binney - I don't do Flexi with my day garments, didn't think of the stockinette - nice idea.
I was not home when I knew my arm was swelling and wanted to get the MLD started ASAP. Always wondered about MLD with the compression sleeve and now I know. Just so much to think about and learn.
Carol - I am still hoping to make next week but will find out tomorrow. If the surgeon returns me to work Monday I may have a hard time taking Tuesday off. I am hoping to talk the surgeon into a return to work on Wednesday.
Oh - I had the brownies (real ones) after the first MLD and before Flexi. I was planning ahead for success!
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That makes me think of something, Ohio. The nurses' training course I'm working on describes and explains complete decongestive therapy, but oh nooooo....I FORGOT TO INCLUDE THE PART ABOUT BROWNIE THERAPY!
Hope to see you at the Summit. We'll hope for the best!
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Granny, Binney........I'm hanging in there........I just want this fixed, and over with..........just get me my "right fitting custom sleeve, and a night garment, and I promise I will stop being a whiner...............is that too much to ask........I have spent a fortune, and still feel like I'm at 1st. base...............it just doesn't seem fair, but then again, life isn't fair........................hugs.
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Binney - the doc knows and was in contact with them and now that I told surgeon I wanted him to take anything that looked suspisious out while he was in there, he ordered a diagnostic booby smash(Mammo LOL) with EXTRA views this afternoon.. not looking forward to that but at least my LE swelling is down. So ready for surgery tomorrow. Breathe, breathe, breathe... Yes, I went to my LE Therapist yesterday and my swelling is down in my arm and breast looks pretty good. Was thinking that might help in the mammo.. They might beable to see something now.
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I am so confused right now... I feel the lump, it shows on the ultrasound, but when I had the diagnostic mammo today - nothing showed up... waiting for the surgeon to call... I just want the stupid lump out, I don't want to wait and watch or have an MRI on top of everything else.... This is the same senario as when we found the cancer the first time... wish the surgeon would hurry up and call .....0
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GmaFoley....so irritating I am sure. We just want answers and hate waiting!
So my "good" arm is now in a uproar with severe cording. I have stretched and stretched and stretched some more but to no avail. Just above and below the elbow is soooo sore that I cannot even straighten my arm all the way. Work is tough as I do lots of lifting usually but have learned that I just cannot lift the tubs up to the counter. I now ask someone to lift for me and then chant " I am learning to accept my limitations" Everyone at work helps so that makes it nice. The LE arm is doing pretty well. No night garment still and just wearing the sleeve and glove to work. I have a tentative date for the Diep recon of Nov 1st in New Orleans. She really thinks that just the recon will help with the "mild" Le in the arm..hoping she is right. If not considering the Lymph node transfer surgery.
Maggie
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Surgery not cancelled, surgeon says he will still take the nodule out... better be safe than sorry...0
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Oh Ducky----once again we are walkin down that same path that suks.I do think I am in betta shape then you are but not by much......all i want is the right bras..is that too much to ask?And speakin of $$$$$$ dont even ask how much i spent in bras....none of them are any good.
And the beat goes on.The good,the bad and the ugly...We will make it.....bet on it.
All of us will...
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Day two of legs wrapped. I don't get why they wrap all the way up because by the time I get home and up my steps it is half way down to my knee. I will say I lived in the bathroom last night. So it seems some swelling is coming down. Arm even looked better this morning.
We will get through this.
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Does anyone have good research sites for Breast Lymphedema and treatments? Breast and Truncal is a newer form of LE.
hugs
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Katarina - you can start on this website. I am sure some of the LE gurus will be by to give more information.
http://stepup-speakout.org/index.htm
There is a lot to learn but this is a good starting point with much info.
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I am so happy, surgeon didn't listen to radiologist and decided to take out the nodule anyway.. Now that I am up to work my computer job(4 am), I hope I can survive without eating.. nerves have already gotten to my stomach and I am already feeling sick.. Breathe, Breathe, Breathe. I am ready and I can do this without any LE effects.... Just got my arm back to normal and breast looks good... ready for lump excision..
Katerina - I agree with ohio - I have breast LE and that site WAS a great start in information..0 -
Teka - decided to wear my sleeve for work this morning - keep all the swelling at bay...
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Every damn bra hurts me under the arm where the nodes were removed.
The sports bras I have are Champion and I love them but they are cut under the area and are not givin me the support i need.
The joy of LE
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YEE-HA! Great PM from GmaFoley. I'll quote:
I'm home. Ipod only. It's out. Looks like it was just garbage from last surg or rads. Path back Friday. Nauseous and in a bit of pain - LE stockette was a hit, no surprises on arm.
All good (except the bit of pain, but hopefully she's got something to help with that).
Brownies all around!
Binney0 -
Glad to hear GMA foleys good news.
Jo-5 & Truncal ladies ....I sound like a broken record, but wearing the fabric from the Soldea Silverwave Abdominal band chopped up in my bra has provided temporary but reliable relief from my breast LE. I use it every day. Especially if I jog wearing it, the breast really goes down. The benefit only lasts for a few hours, but it gets me through. I especially do it if I know I have a long stretch in a real bra coming up that day. A few others on here have tried it and reported sucess. I promise I am not getting kickbacks on this.
http://www.solideausa.com/product/shapewear/Solidea-Silver-Wave-Tummy-Band/S0394A5
Without it the compression bra, be it belisse or whatever really doesn't do much.
I tried turning the band into a bra, but it really works better as a square of fabric inside the bra.
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Anyway can I just say I want OFF this freakin' ride.
My LE has always been in my upper arm, and not that painful.
But now I can feel it in my hand. I actually can't see it, but I can feel it.
Untill now I have been able to cheat on compression at times, but the times I can cheat on the glove are getting shorter.
This despite the fact that I have been swimming, and am a few pounds lighter than I have been in a while.
I am really scared I am sliding into life- long pain.
The funny thinG is that the hand looks fine, no pitting, wrinkles match, blah blah blah...I can feel it and it hurts.
I am seeing my great LE on Friday, and I see Francis in Sept.
I hope if I keep losing weight it will help, but I am not convinced. This seems to be getting worse as I reduce.
It may be time to start wrapping just the hand, me thinks!
It is odd because I always thought my LE would move down my arm, not pop up in my hand when there is so little in my lower arm.
Boooooo LE, I hate you so much.
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Glad to hear the news Gma.
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Cookie!!!!
This is not a fun ride. I really hope the hand is just a "latency" issue and this weather sure isn't helping things. It beyond sucks when you do everything right and LE just won't behave.
My swelling started in my hand, so it's always been an issue.
Compression is sometimes a problem for me as it will trap or push fluid.
Have your great LE check things out, and let us know what Francis says.
ARGHHHH
Kira
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All I want is for someone to find a way to help this LE.................it seems even the "experts" can't get it right..................the worst part is realizing............this is forever.................but then so is cancer...............someone said to me the other day................Wow..does it ever end for you"..................I said ................."yea when they close the lid".......................guess I'm just having a pity party right now............ok, gonna go put on my "big girl" panties.........................hugs
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