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

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  • garnet131
    garnet131 Member Posts: 64
    edited March 2012

    Best Birthday Wishes, Binney.  Hope it's been a lovely day for you!

  • Estel
    Estel Member Posts: 3,353
    edited March 2012

    Happy, happy birthday, Binney!



    You're such a gift and blessing to so many of us here!



    Hope your day was filled with joy and yes, lots and lots of chocolate!



    Blessings and love, dh.

  • olearca
    olearca Member Posts: 215
    edited March 2012

    Happiest of birthdays and batches of brownies to YOU!!!!



    Happy happy day of celebration and a wonderful year ahead.



    ~Catherine

    Multifocal DCIS and LCIS, both breasts.
  • ktym
    ktym Member Posts: 2,637
    edited March 2012

    Happy Birthday Binney!

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

    Happy Birthday Benny!

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

    Betsy Buzz...I developed LE in my legs after my hysterectomy.  I just started treatment in Jan. While you wait elevated those legs.  I  did two weeks of LE treatment and almost four weeks of it being wrapped before my compression socks came in.  It was overwhelming having to learn more stuff but I think I finally have it down.  Now to get the exercise part down.

     My leg is a wee bit puffy today along with the top of my arm.  Tomorrow I see the ortho Dr. finally about my trigger fingers.  I have hit the point and ready to take that risk.  Praying for shots tomorrow but if he says surgery...my answer is ASP.  I can no longer pick up anything with out pain.  The thumbs are staying locked in weird positions to the point it wakes me up at night.  Fingers crossed no added swelling for whatever he does tomorrow.

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

    Okay any help is graciously appreciated.  I will be having surgery in about two weeks on my LE side.  He want do both hands at one time and since my right hand is the hand I use the most I want to do it first.  I want be able to use my hand for a week and then another two weeks at less than 10 pounds.  Which means I can't do my MLD nor put my compression socks on.  What do I do in the mean time?  I feel sure I can manage to get my sleeve on since I don't use that hand anyway.  It will all depend on any swelling though with having to stretch the small part of the lower arm and wrist area of the sleeve over the hand.  Did that make any sense.  lol 

    Oh and of course the thumb that was locked up all last week and had my thumb swollen was unlocked this morning and wouldn't lock for him...and yes as soon as I got in the car and cranked it up it locked up.  

  • KS1
    KS1 Member Posts: 632
    edited March 2012
    A silver lining of being a member of this Swell club ... no need for plastic surgery for saggy, wrinkly hand skin.

    The New York TImes had a piece on the newest craze in plastic surgery ...

    http://www.nytimes.com/2012/03/15/fashion/Skin-Deep-Treating-Hands-for-Signs-of-Aging.html?_r=1&ref=health

    Comparing the before and after pictures, I'd say the woman should cut down on the doritos and do some MLD :) KS

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

    KS, what a hoot. Thanks for posting, especially your doritos diagnosis.

  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2012

    KittyDog,

    So sorry to hear your story but I can finally relate to someone else. Surgery scares the begebes out of me these days. Seams like every time I go under the knife I develop another SE. Do you know if the LE was caused because during your ooph & hysto they removed more lymph-nodes? I asked my GYN onc prior to surgery if he takes more nodes please focus on the opposite side as my LE arm and trunk. He said he did, now I have LE on the leg he focused on but I know he took nodes on both sides and it scares me about my other leg too.Only two days before my LE assessment, I can hardly wait. I've been elevating it, I don't have anything with salt in it and drinking lots of fluids. I'm hesitant to get compression until I know exactly what I need. Thank you so much for writing.

    I'm sorry that you are facing more surgery. My mom had issue with her legs (diabetes) and she had a tool that helped her put her socks on but I'm not sure if it would help with compression garments. You might call your LE specialist to see if there are any tricks that you could use or if there are any occupational therapists that might be able to help you. Sending you positive thoughts, hugs and strength.

    Betsy 

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

    KittyDog, bummer!Frown Take a look at the Ezy-As and see if it looks like something that would help. I have one for my arm and love it (because I never bop myself in the jaw putting on my garments anymore!Embarassed):

    http://www.ezyasabc.com/

    Can you make some appointments with your LE therapist for MLD, maybe a couple of times a week, until you can get back to doing it yourself? Aaaaugh!

    Be well!
    Binney

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

    A million thanks for all the birthday wishes!Kiss I had to laugh at all the references to chocolate, because among my gifts were not one, not two, but THREE 1-lb+ Trader Joe's Belgian Chocolate bars. Yes! How transparent am I?!Embarassed And a jar of chocolate/almond spread. And dark-chocolate covered almonds. And my daughter made me a chocolate Whoopie Pie cake with chocolate chips and chocolate/marshmellow frosting (goodness!) Have a piece, all of you -- it's to die for! (Or maybe to die from...?Undecided)

    Anyhow, a great day, and hugely blessed by all your greetings -- thank you!
    Binney

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

    Binney, you simply have to look at chocoloate as a robust source of antioxidants. Toss any guilt out the window.  Chocolate is practically medicinal;  good for you at all meals, and as a meal replacement, for that matter. In fact, it's so good for you, it makes you younger and healthier with every bite. And if by chance you don't buy into any of the foregoing arguments...you should have it simply because you deserve the luscious pleasure that comes with eating it!

    Carol 

  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2012

    OMG..I was fitted for leg compression stockings yesterday. I could not get the dang things over my foot. I was hoping to get some pantyhose but NFW. It took me five minutes, no joke, to get them on, and by then I was exhausted. Who needs to go to the gym, just try putting on medical compression pantyhose....it's a total work out. Stretching, bending, resistance, it even felt like a little cardio. Now I admit I'm not in great shape but I'm also not in real bad shape either. I work out at the gym 2-3x a week and swim so I'm not a total wuss. I ended up ordering thigh highs and knee highs and bought some lesser compression stockings and knee highs at Rite Aid to tide me over until my order comes in. In the mean time it trying to stretch the dang hose with my hand, I flared up the LE in my chest and arm. Grrrrrrr....grrrrrr! 

    I got instructions for MLD of my leg and my redirection for my arm and trunc. I'm just thankful I love my therapist she is fantastic. I'm scheduled for six more MLD sessions with the therapist and I'm hoping by session three things will be under control so I can cancel the last three.

    I hate LE!

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

    Betsy I have custom ones that go just to the knee...the hardest part is getting it over the ankle.  The material is so thick.  Some days I am exhausted after getting them on...especially when you have to keep unlocking your trigger fingers.  Never fails I get the material almost up and it locks and I loose that grip on the material.  grrrr.  Hope you order comes quick.

  • garnet131
    garnet131 Member Posts: 64
    edited March 2012

    Oh, Betsy and Kitty, my heart goes out to you. You have even more reasons to hate LE than the rest of us!   Sending (((hugs))).

    Garnet

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

    Surgery is March 29.  I talked with my LE PT today.  She said not to worry if we have a set back she would take care of it if we have to.  Of course elevate and do what MLD I can.  If I can get a sleeve or night sleeve on do so but it will all depend on what kind of wrapping he does.  So the waiting begins.  I am trying hard to declutter some before my mom comes.  I cleaned out the pantry and our spice cabinet.  I swear I must buy some of this stuff out of date to start with.I also have managed to shred a box of stuff that has been sitting there since I got sick.  Still have two bags to go through. but making progress. 

  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    Serves me right.  Didnt' think about it this weekend, lounging around in pj's most of the day on Sat and Sun so didn't think about putting on the sleeve or bra.  Swelling started up again in bicep and at the spot where the outer breast goes into that side bra fat.  Guess that'll teach me!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Certainly understand the concern about having surgery when you have LE. When I prepared for surgery last year, I went for a MLD session the month before and the week before. I also went for MLD after surgery to help with post-surgery swelling and it was really helpful. I think I returned to my pre-surgery level of swelling much faster. I was dealing with truncal swelling, which is difficult to wrap and I didn't have a day or night vest. Good luck Kittydog, and best wishes for a speedy recovery!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012
    Hi everyone.  I just joined the ranks of the recently dx with LE and it looks like this is the most active thread.  I had revision surgery a year ago and my PS placed new incisions in my armpits rather than using my original MX scars in my IF that we agreed upon during consult.  I really believe this is what caused the LE but can't get him to admit this is even a possibility.  I just started at a program called Breast Cancer Rehab and really like my lymphedema therapist.  (Sorry, don't know the lingo yet!)  I have early stage LE in one arm only and she was very optimistic.  She's ordered the sleeves and gloves which I should receive at the end of the week.  And I'm starting PT twice a week.  She also taught me the massages which she told me to do 3x day.  Now that I'm really researching all that is involved with treating LE I'm appalled at the nonchalant way most doctors act about trying to prevent it.  I've been taking LE precautions for at least a year now and it's a struggle to get anyone to take it seriously when it comes to BP, blood draws, etc.  Sorry if this has been asked before but are there are printouts I can give to these medical personnel to help them understand?  Ironically, during my revison surgery I insisted on everything being done in the legs/feet (i.v. etc) and then he goes and puts incisions right in my armpits.  Yell
  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2012

    Kate, welcome and I'm sorry you joined the "swell sistahs", but it seems like you're on top of things

    Here's a link for medical providers on LE:

    http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm 

    It was written for providers, so if it's too "jargony" let me know, and I can look for other links. There is a great handout by Jobst on LE, and I believe you can call them to get a copy--the pictures are very frightening, but the message is clear.

    http://www.jobst-usa.com/en/contactus/page.html 

    Most doctors are nonchalant or in denial, unfortunately, but we're working to change that.

    Please let us know how you're doing and any more information we can give you

    Kira 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Kate, I'm so sorry to see you here on this forum, but it sounds like you have a good head start in addressing the LE with your therapist and learning self care. I am going to PM you some info I originally wanted to post on the Uncomfortable Implants thread. Things got too hairy over there and I feared my post would only stir things up again in a nonproductive way. I may go back and post there (because it Should be there for a reality check), but I think you deserve to digest without interruption. However, I attended a conference this past weekend with Dr. Marga Massey, who is a PS and very much involved in LE. She has her LANA certification and practices proactive LE care when it comes to recon surgery. She is the one who destructed me. She discussed all the current forms of recon, the pros and cons. This particular conference was limited to 30 attendees and was comprised mostly of LE therapists and a doctor and was a little more advanced. While she described all the current forms of recon, the presentation also focused on LE prevention and care aspect as it relates each type of reconstruction. She also talked about node transfer surgery. Anyway, I was able to ask her some specific questions and wanted to pass this additional info on to you as well.

  • olearca
    olearca Member Posts: 215
    edited March 2012

    Kitty - will be thinking of you on March 29th - and hoping for no extra swelling!!  WTG on the cleaning - you got me motivated to at least clean out one bin of crap!

    Tina - I just signed up for Dr. Massey's event in NYC.  I am so looking forward to it and loved hearing about your DC adventures!

    Kate33 - So so sorry you are joining us here.  I so hear you on the lack of knowledge and information from MDs - and you will find so much info here - Kira and Binney and LindaLou and Jane are the BEST!  This is such a supportive group and there is a wealth of info and love and support as we all learn to deal with this "silent side effect".  You will get through it but its not always easy and we'll be here for you. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Olearca, I think you will enjoy Dr. Massey's presentation. Besides knowing her stuff, she has such a nice way about her. I came away from the conference with a lot of good info. She definitely is on a mission to promote LE awareness and has great compassion for those with LE.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    kira- Thanks for the welcome and the links.  I appreciate you taking the time to post that.

    olearca- Thanks for the welcome, too.  It sure helps knowing there are so many knowledgeable members to turn to about this.  Sounds like they know more than the doctors do! 

    Tina- During the drama on the "Still uncomfortable with implants" thread I almost came over for reinforcements!  lol!  Thanks for the PM.  I was reading it on my phone as I was waiting for my PT appointment so will go back and digest everything.  

    My 2nd appointment went well.  I also have a messed up shoulder on the opposite side that was preventing me from doing the drainage massage correctly.  She worked on that and I have some improved range of motion already.  

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

    okay, so we're kicking LE's butt, but it still stinks to have it, and it's okay to have days that we don't triumph over it, and times we resent it and it scares and upsets us.

    But I do appreciate the move away from victimhood

    I'm going to try really hard not to let it define me, and but dealing with it is still a royal pain,IMO

    To quote Mary Chapin Carpenter: "Some days you're the wind shield, some days you're the bug."

     Trying hard to be the windshield, but some days, I am the bug...

  • Estel
    Estel Member Posts: 3,353
    edited March 2012

    Kira - With the change in weather ... I am the bug most days the last couple of weeks.  Frown  I forgot how badly the warm weather makes me swell.  80 degrees + in March = 1 grumpy girl!

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

    Dawn-Hope: I've wrapped for years, and last night my pinkie hurt, but I was too tired to re-do it: and I just figured out, I caused a blister!!! Antibiotic cream and bandaid on, but I swear, it's always something.

    The heat is bugging me too. 

    Kira

  • Alyson
    Alyson Member Posts: 4,308
    edited March 2012

    Just popping by

    Lately LE has been reasonable and I have been in control, then for no reason I can think of it flares this morning GRRRRRRR I hate LE. Should have realised as truncal area has been sore for a few days.  

    Have had frozen shoulder for ages and thats not improving so feeling cross this morning. 

    Kira hope you little finger gets better soon.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012
    Kira - I love that we allow each other to have the full range of emotions on this forum. No whitewashing the reality, yet doing what we can to take control of our lives. The support, compassion, understanding, knowledge, and motivation here is terrific! Love that song.




    This early heat is no fun. Trying not to worry, but definitely paying attention to my body. I'm sorry you guys are swelling from the change. I swear it's also more humid than usual.

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