GRRRRRRRRR I HATE LE..........

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    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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  • sandcastle
    sandcastle Member Posts: 587
    edited August 2012

    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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  • ohio4me
    ohio4me Member Posts: 491
    edited August 2012

    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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  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    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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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    Ohio, brava on the 15-minute wrap--what a pro!Cool What are you doing to celebrate? We need to pass around those brownies with the thick chocolate frosting!Kiss

    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!
    Binney

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  • ohio4me
    ohio4me Member Posts: 491
    edited August 2012

    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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  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    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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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012
    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 .....
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  • mags20487
    mags20487 Member Posts: 1,591
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012
    Surgery not cancelled, surgeon says he will still take the nodule out... better be safe than sorry...
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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    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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  • KittyDog
    KittyDog Member Posts: 1,079
    edited August 2012

    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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  • Katarina
    Katarina Member Posts: 386
    edited August 2012

    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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  • ohio4me
    ohio4me Member Posts: 491
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    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..
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  • Teka
    Teka Member Posts: 10,052
    edited August 2012

    GmaFoley,

    Thumbs Up!!   I'll be looking for your post this evening.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Teka - decided to wear my sleeve for work this morning - keep all the swelling at bay...

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    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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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    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!SmileCool
    Binney

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012
    WinkCool
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  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    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.

    ******************************************* 

    Anyway can I just say I want OFF this freakin' ride.Yell

    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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  • BeckySharp
    BeckySharp Member Posts: 935
    edited August 2012

    Glad to hear the news Gma.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    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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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited August 2012

    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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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Jo-Cookie cuts up the Solidea wave fabric and inserts it in her bra.

    GMA--glad it was a false alarm. Heal up.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    hey - being it is my LE breast - no ice? i noticed they didn't give me an ice pack this time?

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    JO-5 I have been using the same square of fabric for two years! I used the comprex above my elbow tho. (At least I think that's what it is)

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    Cookie-I checked that out and it looks real good.I just dont know about the sizing.

    I have no problem with tight under garments cause I have been sleepin with a bra and tight like underwear all my life....I think it could woork for me just the way it is BUT Im waiting till i see the PT on the 22 before i spend a small fortune on these products.been there done that.Im good now THANK YOU GOD.Still doin the same old and wouldnt dare stop.This crap is soooo scary!!!!!

    Ducky------Damn it---when your down the only place to go from there is UP....hang in there sista...We all are gonna win this battle!!!!!!!!!!!!!!!!!

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