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

Options
1…144145147149150…332

Comments

  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    wow, then do check the folks at centra states as I know that Grannydukes is happy, so far!

    gees, been thinking about taking a training season so learn this and really want to see if I can do it

    · Share on FacebookShare on Twitter
  • ohio4me
    ohio4me Member Posts: 491
    edited July 2012

    I am 4 days post prophy MX and feeling good. I have been very careful about arm movement but wondering how long I need to take precautions to reduce risk of LE (no nodes removed). Had lymph drainage (by LMT) twice this week and no swelling is present.

    Someone (here) said I should not raise my arm above shoulder height for 7-10 days (I think). Just need to confirm the time and the whys so I do this right. I need to get moving on some exercise on the LE side and just wondering when I can add exercise on the prophy surgical side and if there are restrictions on what I should add.

    This surgery is my cut-off point to get on the nutrition/exercise band wagon. Getting my plan in order so I lose some pounds, increase my strength and reduce LE severity/recurrence (whatever). I promised myself I would really try and learn to live nicely with Little Martha (LE arm) and that starts now.

    Info is appreciated.

    · Share on FacebookShare on Twitter
  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2012

    well grannydukes just fired the centra state PT.....that is #2....I was happy till i ran into a problem with the bras....then i remembered she didnt even measure me.so i called back today to cancel my tues apt.cause i couldnt get any bras and she was supposed to call me back and never did...SEE YA.....

    No I called my BS who works out of Riverview and she now wants me to go to their PT.LANA and all the other good stuff....im sick and tired of all this crap.Im doin my exercises,drinkin plenty of water and sleeping with my expensive sports bra....even the Kiniseo tape didnt work...maybe its just me but im fed up with all of this....

    have i told you lately how much i hate LE?

    Sandcastle---I feel your pain....Not all LE PT are created equal...im not gonna stop till i get what the hell I want...Took me 4 BS to be satisfied....Dont give up.never give up.We can do this.I say it over and over again.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Ohio, it's good to hear you are doing well and not experiencing any swelling. I believe two weeks is the time the lymphatics need to heal, and not raising arms above shoulder height minimizes stress to this area. I didn't know at the time of my bilateral mast, but even with a prophylactic mast or no sentinel node biopsy, when they remove the breast tissue that goes up into the axilla area, the tail of spence is removed, which includes several lower axillary nodes. So, any mastectomy should allow two weeks healing of the lymphatics. Limited arm raising will not prevent you from walking and moving around more as you feel able. I wasn't allowed to raise my arms above shoulder height at the time of my mast because the PS had inserted tissue expanders and didn't want the pockets damaged. I started stretching immediately after that period and didn't have any range of motion problems.

    · Share on FacebookShare on Twitter
  • sandcastle
    sandcastle Member Posts: 587
    edited July 2012

    Granny.......I have kind of come to this conclusion about LE....We are on our OWN.....and we can do this well......just keep researching.....all the time....a lot of trial and error...I know the place I went to Use to be Norton's in fact the BS and his office did not know they changed......but I have to say a lot of this seemed HokusPokus to me......I did ask after MLD...How do you know the Lymphatic system is Open and the LE Therapist answered WE DON'T KNOW!  I did go a whole year without this group.....I do the deep breathing and that seems to help me....so I will just Truck on......Somtimes it seems too many Doctors involved can just be so Depressing.....Inner Peace is more important....Liz

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Can I just say GRRRRRRRRRRRRRRRRRRRRRR.. Good news is I got the swelling in my good and bad arm down a bit - not sure if it is bad news or just LE LIFE but now my bad breast hurts something fierce this morning..  Is LE a life of YO-YO - Back and Forth - Never everything better at the same time??? Frustrated - just wanted to take sleeve and swell pads off today.. I have all my computer work to catch up on because of the time I took off for the grandkids :-P  

    Edit: I must still be going through the realization stage of this... I think I accepted this lot in life, then I get scared.. and cry.. 

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012
    GmaFoley, good to hear your arms are feeling better. I think it was Kira's therapist who once said that dealing with LE was like playing whack a mole. Sometimes it moves around without any reason or predictability. Since I have truncal LE and now my arm and hand are somewhat involved at a low level, I am experiencing much of what you just described. Rarely is everything behaving all at the same time, and it is very frustrating. I keep reminding myself that it is summer, and one's first summer with LE is, in my experience, the worst. It gets better further out as long as you stay with the MLD and compression. You are training your body to reroute lymph fluid around the compromised areas, and it does take a while for it to learn the new pattern. The fact that the body can be retrained in how to move the fluid is really amazing. Perhaps Kira or Binney can jump in here to clarify, but I think it takes about two years for this retraining, which is why it does seem to stabilize and feel better the further out. It's the best reason (I have been telling myself this about my arm) to be consistent with the self care routines, the MLD and compression.




    It is not unusual to have the feelings you are experiencing. The unpredictability and element of the unknown is frightening. There definitely is a period of adapting to all the self care routines, learning about LE, and a mourning that goes along with it. And I do think in the beginning there can be some back and forth with denial, acceptance, frustration, anger and sadness. We have also talked here about how flares seem to bring on some kind of physiological changes that can make folks irritable and weepy. The main thing is that it does get better. Binney and Kira always always say that there is a steep learning curve for LE, but once you get a grasp of the info and you develop a routine that works for your LE, you do feel more in control, which tends to boost one's outlook. It is doable, and you will get there - you have our support. And no matter how long one has had LE, it can make one emotional at times, because, well, LE does suck. I had an anxiety attack and emotional meltdown a few weeks ago before a vacation, and I was amazed at how everyone here really got how I felt. Their sharing and compassion lifted me out of a dark hole. You are not alone in how you feel. Let us know how we can help.
    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    I don't have a routine that works. We had to reroute things because of the axillaries were toast.. He showed me how to move it down but, excuse my language, I cant get around my damn boobs, to move things down - I'm just very uncomfortable... I do my best, but my time with getting the LE therapy is coming to a close - its $300/ visit... 

    Then there is the night garments - I don't want to wear my sports bra with swell pads to bed, and every compression shirt I have seems to not fit - either the arms are too big or the torso is too small - I'm feeling very fat!!!!  

    · Share on FacebookShare on Twitter
  • Estel
    Estel Member Posts: 3,353
    edited July 2012

    JO-5 - Oh yes, the worst my LE has ever hurt is when we've had big storms.  Mine is affected big time by pressure/weather changes.

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Jo-5 Now that I think about it - it is overcast, cold and cloudy today - yesterday it was high 80s and I have lots of pain in the breast and axillaries today.

    · Share on FacebookShare on Twitter
  • KittyDog
    KittyDog Member Posts: 1,079
    edited July 2012

    Weather plays a big roll in my pain.  We are on another heat wave and it stormed all day yesterday.  I have pain under the arm yesterday and today I woke up with my chest hurting. 

    · Share on FacebookShare on Twitter
  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2012

    the weather plays a big part of it...even I know that much.I feel so dum about this entire thing.same as when I was first dx.I was so dumb..this is a new ballgame and the more I play in this damn game the more I am hating it....And the less I am understanding how to handle it.

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    I'm trying not to panic ladies - Maybe its because my swelling is down... but when I was doing my MLD before bed I found a pea sized lump about an inch away from the end of the scar, in my breast.. Its been a year since rads... Its got to be scar tissue - Correct???? Cancer cells shouldn't be in my radiated breast so soon???

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    GMAFoley--why does this stuff happen on weekends??? Best to have your surgeon feel it, and put your mind at ease.

    ARGHH

    Kira

    · Share on FacebookShare on Twitter
  • patweaver12
    patweaver12 Member Posts: 2
    edited July 2012
    There is a hospital in New Orleans that does lymphnode transplants.  I found them on the internet.  They were very nice and checked with my BlueCross Insurance to see what I have to come up with to have the surgery.  Over $7,000...so as of right now I'm stuck with a left are that is significantly larger than my right...but have started saving.  The name is Center for Restorative Breast Surgery  Email stacy@breastcenter.com and she will be happy to help you.  Good Luck!! Pat
    · Share on FacebookShare on Twitter
  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited July 2012

    get it checked gmafoley. don't take chances. damn. i'll be without internet for a while so all i can do is keep you in my prayers.

    · Share on FacebookShare on Twitter
  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2012

    NJ weather is like soup out there...everything hurts and nothing works.

    We had a big storm last nite.slept right throu it.

    I heard it was 107 in Dallas Tx.damn.

    · Share on FacebookShare on Twitter
  • KittyDog
    KittyDog Member Posts: 1,079
    edited July 2012

    I agree it's most likely scar tissue that has developed but you need to have it checked.  My scar tissue didn't form until after a year.  I had some pea size ones right after surgery but now the whole area has scar tissue with small lumps everywhere.  Scares the tar out of me everytime I feel them.  

    And yes it was happens on the weekend. 

    · Share on FacebookShare on Twitter
  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

    finding a lump is too scary!  I agree get it checked.  I just had 2 spots on my skin biopsied and one came back positive for cancer.  So guess I am up for another scar this time on my back. 

    patweaver...i am seeing one of the docs in NO that does that surgery for my Diep and if the diep doesn't help the LE to get better I am going to discuss with her the VLNTx surgery.  I almost do not care what it costs and am starting to save me pennies now!  The success rate is really high on it too.

    Been a rebel for the last couple of weeks and do not wear my night time thingy.  I have also stopped wearing the sleeve everyday and have been wearing it for exercise and work.  So far so good the swelling has stayed the same in the hand.

    Maggie

    · Share on FacebookShare on Twitter
  • nibbana
    nibbana Member Posts: 464
    edited July 2012

    Went on a hike today and I look like a puffer fish. I feel like I'm walking around with chronic, low-level swelling constantly. I will get my sleeves this coming week, so hopefully it will do the trick. I need a good MLD tonight, lot of fluid to move.

    · Share on FacebookShare on Twitter
  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited July 2012

    hope you get it moved nibbana.

    i'm having to use the paint roller trick to do my mld these days because my good arm is in a cast. so glad i read about the paint roller trick else there would be nothing i could do. so thank you.

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Nibbana - It feels so horrible when you are swollen - hope the MLD gives you some relief!

    Why when you want something checked the hours go so slowly - Been working since 4am and I still have 3 hours before the office opens Tongue out 

    · Share on FacebookShare on Twitter
  • sandcastle
    sandcastle Member Posts: 587
    edited July 2012

    I WISH you girls would go over the Paint Roller trick....or direct me to where it is....THANKS!! Liz

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Doc just got back from vacation and will start seeing patients tomorrow - she tried to get me a thursday appt and i started crying(really didn't mean to Frown)... works every time though... She is going to call me back and find a cancelation to get me in tomorrow... I really feel like I am crying "wolf" when I ask for them to check things out and it turns out to be nothing Undecided 

    I was talking to a young friend yesterday at church (who was causing my boarder a little grief) , My Boarder came up to me after and asked what did he want?  - I told her that he was just asking how I was and gave me a hug.. I found out from my new boarder that people at church told her I am super emotional..So she just wanted to "Protect" me from him. Oh GREAT! I never even thought people thought that about me.. I am real bummed... EMOTIONAL - They haven't Seen Emotional and Yes emotion is my fate, since BC, it seems...

    · Share on FacebookShare on Twitter
  • Estel
    Estel Member Posts: 3,353
    edited July 2012

    GmaFoley - We hope it IS nothing.  Cannot be too careful.  xo

    I think this OT that my dad hooked me with  ... she doesn't know what she's doing.  I think she's had some LE training but she is not certified.  I know more that she does.  When I told her I couldn't sleep in the sleeve and glove she asked me why?  Undecided  Definitely not a vote of confidence.  She wrapped me but I took it off and it was worse in my hand than before.  She gave me a video and wanted me to watch it and then come in tomorrow morning and have me wrap in front of her.  I totally haven't watched it and don't want to.  I so wanted to learn how to wrap but I don't think this lady knows what she's doing ... thinking about calling and cancelling the appt. in the morning.   

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Dawne-Hope I am so sorry your OT isn't working out - we only have one LE therapist in town.. I did ask him about teaching me to wrap though - he said we would talk after the granddaughter left - then said he thought, being I had a mild case and most was in my breast - a little bit in the upper arm he didn't want to Cause me that Stress.. He said if I could get my DH to come in with me to learn (fat chance), he would teach me... He went on to say, IF and/or WHEN it is needed, we would deal with it then. I understood, after watching one of the wrapping videos...

    Still waiting for the call back with appt for tomorrow - maybe I will ask my LE T what he thinks about the lump when I see him this afternoon - he knows what scar tissue is ROFL... Don't worry, I will still go to my surgeon when he makes me that appt Undecided 

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    Dawn-Hope--the OT doesn't sound like a great resource. I'd say--watch the video and find someone else.

    Did you ever see the amazing link Nitocris put up on wrapping--remember, everyone does it differently, but it's a good reference.

    Here's what I do differently--I don't use artiflex--I use the soft foam roll--Rosidal soft. I don't do the basketweave--I just roll it on. So it's a reference, but not the only way to approach things.

    Nitocris also found a youTube video of JoAnn Rovig wrapping, I'll see if I can find it.

    Found it!

    http://www.youtube.com/watch?v=OWq1kP4fvtY

    http://www.jobsttilaus.fi/_includes/GetFile.cfm?id=3875115bacc48cca24ac51ee4b0e7975&FileVariant=original  

    I went through 5 therapists before I found my therapist. You take away the good, and avoid the bad, and cut your losses and sever the relationship if there's no trust or assistance.

    ARGHHH

    Kira

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Update:

    Got an Appt with the surgeon at 3:30 tomorrow..

    · Share on FacebookShare on Twitter
  • nibbana
    nibbana Member Posts: 464
    edited July 2012

    What do you do when MLD doesn't work?

    I'm blowing up here. We have couches at work so I lied down and did the full MLD sequence. Arm is still swollen.

    What now?

    · Share on FacebookShare on Twitter
  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Drink water and elevate. Do some abdominal breathing slow in and out. Binney has told me if you do the MLD too fast or too hard, it can make things worse. Breathe.

    · Share on FacebookShare on Twitter

Categories