OMG They Found the Cure for Stupid

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  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    FK, I got that one too.

    When I was diagnosed I thought all BC was the same. I learned so much from this site. I had no idea there were different kinds, all with their own complications. I miss the days of blissful ignorance.

  • gmafoley
    gmafoley Member Posts: 5,978

    Amen to that - blissful ignorance  

    I think the big one for me was the - "but your arms aren't swollen - you can't have lymphedema, I only took out one node"  Found out a year later, I had truncal LE and now, as of yesterday - the new Lymphedema therapist is talking about wrapping my arms. Loopy  I'm up 2-3 cm.

  • duckyb1
    duckyb1 Member Posts: 9,646

    gma.....been dealing with LE for over 3 years.......would you  believe still no one can get a sleeve fit right...........absolutely horrible...........have had it all.......too short......too tight.....silicone ......slips down........wrapping, night sleeve doesn't fit...........finally said f--k it..........approved for custom........so far had 2 both made wrong..........went back.................no one takes LE seriously...$30.00 co-pay for 1 hour, and they spend more time talking then treating you............I've had it..............enough is enough.........I realize it could only get worse..........but if they can't get it right after 3 years trying............I give up.....

  • gmafoley
    gmafoley Member Posts: 5,978

    I understand Ducky - I have been mild - more in my breast than anywhere else.  But being my first LET was a male, and he avoided certain areas I decided to try this other gal in town - she was trained by a well know LET in the area but she is in my town.  She was trained a bit differently than the other and I thought the change might be worth it and she is $300 less than the other I was going to.  Only charges me $45 (no insurance).  First thing she brought up after finding out my measurements were up - was to wrap being MLD is hit an miss.  She says my breast scars are a mess and which ever way I push the fluid, its going to get stuck somewhere. She gave me new suggestions/changes in the MLD. She also suggested garment pumps?  I just never thought I would be one to swell to HAVE to wrap.. Just starting to wonder if it was me not being diligent with the sleeves and MLD or the acupuncture.  Guess we will see what happens.

  • duckyb1
    duckyb1 Member Posts: 9,646

    gma.......I really believe it is a lose, lose situation.......I don't think anyone knows really how to treat it, and they just keep trying............guinea pigs again are we.............oh well it is what it is...........

  • FireKracker
    FireKracker Member Posts: 5,858

    GmaF I have trunk LE too.stage 0 but I read on one of these threads that stage 0 is worst then stage4... Cause u don't take care of it....well I do every single day,went to therapy 2x and the third told me I'm fine...oh yeah so why does my breast hurt all the time,every day?????????

    And u ducky,,,I think if I had all that crap with the sleeve that u had I. Would have killed someone a while back....remember all those damn bras I bout,make everyone crazy here

    And the 3 of us have to put on a happy face cause we r alive....

    End of rant

    I hope and pray one day we will all be pain free...

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    I'm sorry you all have to suffer so much with LE.

    I am also starting to swell. I didn't have the SNB for that very reason - I didn't want to get LE. The problem is, I can't figure out if it is LE or my RA. I'm hoping it's that latter. It's getting difficult to get my wedding ring off and on and my armpit is definitely inflamed. Is that how it started with all of you?

  • duckyb1
    duckyb1 Member Posts: 9,646

    Kracker.......yes I remember the bra's...........LOL

    Slow.........mine began with swellling in my arm..........it was not very much,but it was still swollen......in the beginning I was very vigilant wrapping and doing what I had to do......after spending $600.00 in co-pays, I got measured.........that was the end.......no one could get the sleeve right..............it got very depressing, and wrapping was very difficult doing it alone..............I got frustrated, and thought  "the hell with it"..............now it is bigger, and 3 years later no one has yet to get it right..........

    It is horrible, and it never goes away........this is lifetime..........oh well shit happens...........

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    I guess I should get a referral for a LE specialist. They offered me one when I had surgery, but they also told me my risk was minimal without the SNB. I have an appointment with my RA doctor at the end of July to have my knees drained. Maybe I'll wait and see what she has to say. Thanks for the info Ducky.

  • wren44
    wren44 Member Posts: 7,932

    Slow, Get the referral now. If it is LE, the sooner it's treated the better. Better safe than sorry.

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    Thanks Wren. I will call my BC coordinator tomorrow.

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239

    I still say a nice asparagus puree applied would probably help all of you ;)

  • duckyb1
    duckyb1 Member Posts: 9,646

    Enjoy.............does eating it have the same effect......LOL

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239

    Oh if only fixing the stuff we want fixed were as easy as all the self declared "experts" say it is.  Considering even scientists can't all agree on all of it......  I do think people think they are being helpful...  Ducky let's all eat asparagus and see what happens.  Maybe it will take the cellulite off of me as well, why limit it to merely curing cancer :)  I love asparagus and I am sure the poor maligned vegetable is good for you in many ways just not sure it is the snake oil people claim.    Let me know how it goes, Ducky!  Ya never know!!!  

  • duckyb1
    duckyb1 Member Posts: 9,646

    Enjoy.........it has a short season.............and it must do some good......ever notice what happens after you eat it and go to the bathroom........Phew..................

    Maybe it takes all the nasties out of you...........

  • gardengumby
    gardengumby Member Posts: 4,860

    my brain is dead. What's SNB? My wedding rings are getting more difficult to take off, too.

  • duckyb1
    duckyb1 Member Posts: 9,646

    Hi GG......Sentinel Node Biopsy...............checking the sentinel node for cancer cells.....

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    LOL...cracks me up how we go from talking about LE to what asparagus does to us in the bathroom! I put a call in to my BC coordinator. Haven't heard back yet. I'd rub asparagus all over my body if it would do any good. I'm not proud!!

  • proudtospin
    proudtospin Member Posts: 4,671

    if the asparagus works, I will get to planting some in the back 40 just for you all

  • FireKracker
    FireKracker Member Posts: 5,858

    It doesn't work PTS

    There is no cure for stupid.....

    Stupid drs,stupid food,stupid ppl,,,and the list goes on..

    Plant them anyway,they r good for U

    Can u tell I'm cranky??????

    Stupid glutton free diet I'm on....IM STARVING

  • proudtospin
    proudtospin Member Posts: 4,671


    well asparagus are gluten free~~~by the way, a nifty whole foods opened up, just down the way from your old homestead in Nj, pretty nice place

  • FireKracker
    FireKracker Member Posts: 5,858

    Oh I am eating the asparagus along with other Veggys but it's not enuf

    I lost 5 lbs and I'm sure more to come

    Most of the glutton free food r loaded with salt...and salt = LE.

    Sure I move away and a nice whole food store opens up prolly right by my apt....

    U no what I ate today???? An avocado sandwich on glutton free bread.uggggg

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    My daughter has stomach problems and her doctor put her on a gluten free diet. She was REALLY cranky too. It didn't really help her though, so she went back to her normal diet. I hope it works for you Kracker.

    I really like Whole Foods. They are so expensive though. We have a weekly farmers market with local produce that's pretty reasonable.

  • FireKracker
    FireKracker Member Posts: 5,858

    I'm not a veggy eater,,,,that's the problem and they don't fill u up anyway

    U wanna talk about expensive????. How about a small loaf of bread for over 5 bucks

    A small box of cookies also over 5 bucks,and of course it's loaded with salt and sugar.

    What a great store whole foods is to shop in,,,We have Wegmans here,,,they r also expensive

    What's a cranky person to do?????

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    I know how you feel Kracker. I wasn't a veggie person either. Since my diagnosis, I've really forced myself to choke them down. I've found they are pretty good with olive oil, salt & pepper, and roasted in the oven. I've actually grown to like many of them.

    GG, have you been diagnosed with LE? Is that why your rings are difficult to get off?

  • FireKracker
    FireKracker Member Posts: 5,858

    slow,,,I eat my veggies without salt,,,ugggggg

    I save the salt for other things

    Everything really tastes fugly

    BUT

    I am feelin betta ...ok shut up FireKracker..

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    I'm glad it's working. It would be awful to be eating that way and not have it work. They still haven't figured out what's up with my daughter's stomach. She even had a colonoscopy. She's only 26.

  • duckyb1
    duckyb1 Member Posts: 9,646

    image

    Kracker.......you don't need veggies, or a gluten free diet to make you cranky..............LOL......it just comes natural.....

    By the way if your doing a glutton free diet that means your not eating a lot but a little.......now to get things straight.............your on a GLUTEN FREE DIET........not GLUTTON FREE..........enough said.............LMAO.........

    You really need a damn ROAD TRIP................Lets get kickin..............love you sweetie..........

    image

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702

    image

    Road Trip!!

  • gardengumby
    gardengumby Member Posts: 4,860

    SDB - I've never been diagnosed with LE - right after I had my mastectomy I went to a Lymphedema masseuse, and she implied that I had beginning LE, but to be honest, I didn't trust her.  She gave me the creeps so I did't go back.  BUT - I worry.  To be honest, my entire life I've had issues with swelling off and on, but now when I swell, or hold water, I get scared that I'm getting LE.  It's probably nothing but me being paranoid.  At least that's what I'm going with tonight.  Tomorrow may be a different story....  :)