A Special Valentine to Binney and Kira

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carol57
carol57 Member Posts: 3,567
edited June 2014 in Lymphedema

Dear Binney and Kira,

Your swell sisters at bc.org send you this valentine, a message from all of us who benefit from the amazing gifts you give to the bc.org lymphedema community.

You give us your time: hours and hours spent scouring the LE forum, looking for hands raised with questions and concerns.

You give us your patience: No question can be asked too many times, no advice or resource worn out through its repeating.

You give us the benefit of your persistence: insisting on accuracy, and hounding mighty institutions to repair mistakes or omissions that might harm the LE community if left uncorrected.

Binney and Kira, a truckload of brownies would not be adequate to express our gratitude for all that you do for us. But we wish to find a special way to do just that, so many of us have joined together (the PMs were really buzzing lately!) giving our own gifts to the lymphedema community, as a special way to honor you.

We have made contributions of $665 to date, with recipients including two garment funds plus bc.org, which of course, is how we met you! Garment funds receiving donations are the NLN fund and Lymphedema Resources, Inc., both of which have a national reach.

Please read the following posts for recent discoveries about garment funds!

Happy Valentine's Day, Binney and Kira! 

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Comments

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

    To all who join in the chorus of thanks-

    We could not PM everyone posting on the LE forums, so apologies if you would have enjoyed being included but did not catch word of the project.

    Please add your own heart-felt thanks in posts to follow. And, if you would like to donate to a lymphedema garment fund, there are more funds out there than most of us might think! (See the next post.)

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

    Since organizing the B-K Valentine Group, we have come to understand that the NLN fund has some requirements that limit accessibility to the fund: Both the applicant and her LE therapist or clinic must pay NLN membership dues to apply for garment help. Even so, some of us in the Valentine group know of NLN garment recipients. Lymphedema Resources, Inc. has no such requirement.

    In response to questions about NLN's fund, and to Kira's post the other day telling us that American Cancer Society has suspended funding for LE garment help, I spent some time researching availability of garment help.  That research is still in progress, but so far, I have identified 26 funds in 21 states, plus two funds in Canada and one in Australia.

    If you would like to see the list, click here (or copy/paste into your browser): 

    https://docs.google.com/spreadsheet/ccc?key=0AtSa_oHjzz_8dE02eTZUV3Y3ZVVBR2JaRVJGT3BCNFE

    (I sure hope the link works!  If not, PM me and I can send the list to you by email.)

    AND... Consider double-checking and adding to the list! I found these funds using Google, and by harvesting website addresses from sponsor websites and in a few cases, news stories. If there is a fund listed for your state, why not call and verify the information? You can send me corrections via PM, or there is an email address on the document.

    You can send me new listings, too.  I have learned that many, many hospitals and LE clinics receive LE garment and treatment funding for the underserved, from their local Komen chapters. Many hospitals do not put such funding on their websites, but they make the assistance available as needed.  You might call your local hospital or clinic and ask about that.  Or ask your local Komen and/or BC or LE support groups if they are aware of a local fund.  We can make this a very valuable garment resource if we work together to identify resources in all of our regions.

    Carol

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

    Carol, I'm stunned. Thank you so much. And thank you to all the other people who contributed.

    Binney and I hold these long conversations (some day she'll get caller ID....) about why we hang around this forum and don't "move on"--and Binney says it's because there is still need and injustice exists--the injustice of inadequate information and treatment. And coverage for treatment.

    I just read FuzzyLemon's post about LE therapists who don't care, and I completely agree, so there you go.

    LE has changed my life: I live with it daily, and because I work in rad onc--I see it daily, and because I have some health care credentials, I've been allowed to contribute to the dialogue of LE researchers. I don't want it to be the central focus of my life, but it is a big part of my reality.

    Thank you again: I am just so surprised and touched, and thank you all.

    Kira

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited February 2012

    HAPPY, HAPPY VALENTINE'S DAY Binney and Kira.  You are so deserving for all the help you have given us and you will keep on giving with the donations in your names. 

    My therapist says they have obtained garments from NLN for patients several times.  I will let her know of other sources.

    Thanks to Carol for organizing this thank you to two very special people.

    I love the heart shaped brownies!  Pass one over to me!!

     Becky

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  • Estepp
    Estepp Member Posts: 6,416
    edited February 2012

    HAPPY VALENTINES !!!!!!!!!!!!!!!!!

    Binney and Kira........... you have been such a resource for us! For me.... the only resource when I started this LE journey! THANK YOU !

    Laura

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited February 2012

    Happy Valentine's Day from me as well!!!  THANK YOU BOTH SO MUCH!!!!

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

    Kira, It was my pleasure to organize this.  Many women participated, because your fan club is very big!

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

    Binney and Kira - Thank you from the bottom of my heart! You and SUSO were my first connection to accurate information and helped me to find a great LE therapist. It changed the quality of my life, and I will always be grateful. You guys totally make a difference with all you do! XOXO



    Carol - Thank you for creating and organizing such a wonderful Valentines thank you for our swell friends! XOXO



    Please pass the heart-shaped brownies!



    Tina

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  • Nitocris
    Nitocris Member Posts: 187
    edited February 2012

    Binney and Kira, 

    Words are not enough to thank you for your time, energy, and dedication to this Board.  Thank your for sharing your knowledge and always finding the right words when we need support.  You certainely make a difference in the lives of many women.  Happy Valentine's Day.

    Carol, 

    A big thank you for organizing the collection for the garments funds. It is a great idea and hopefully, many women will benefit from them.  Have a Happy Valentine's Day.

     All the bestSmile

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  • Marple
    Marple Member Posts: 19,143
    edited February 2012

    To our LE heros.  You help us all to be heros.

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

    I'm thunderstruck -- tears and all.Surprised THANK YOU, ALL! A donation for garments (and for bc.org) is the most wonderful gift I could imagine. I can just taste how much this will mean to the recipients -- it's a gift that gives them back their control, their life. It doesn't get any better than that. I am SO grateful.

    YOU GUYS ARE ALL INCREDIBLE! A happy Valentine's Day to every one of you. You're all exactly what love is all about!

    Well, and brownies, of course.Wink

    Huge hugs all around, and may every recipient wear her garments with pride and in great good health!
    Binney

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

    Carol, WOW! to your list of garment resources. Who knew?!!! That's a terrific resource, as it's always been so hard to pin down.

    Really heartening--thank you!
    Binney

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

    Binney, I think we might all call our local Komen chapters to ask for information about grants for LE treatment and garments, because I bumped into so many of my garment-fund list items by catching Komen press releases in my google searches. That led me to hospitals and clinics, whose websites I searched for evidence the garment help is still active.  If all of the swell ladies in this forum did that little bit of research, our garment-fund list would grow and become quite useful.  To view the list, use this link: 

    https://docs.google.com/spreadsheet/ccc?key=0AtSa_oHjzz_8dE02eTZUV3Y3ZVVBR2JaRVJGT3BCNFE

    To add to it, either PM me or use the email address you'll find at the top of the garment-fund list the link takes you to.

    Carol

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  • KS1
    KS1 Member Posts: 632
    edited February 2012

    Dear Binney & Kira,

      I know I speak for many when I say that you are LE heros.  

    When our doctors and therapists don't know the answers, we know you will.  

    When we feel like the people we pay to help us manage our swell situation have abandoned/neglected/ignored/given up on us, we know you haven't.

     When our garments don't fit for the upteenth time, we can hear you urging us to stand our ground and send them back.  

    When we just can't deal with yet another flare or bout of cellulitis and are ready to give, we remember that you wouldn't just throw in the towel. 

    And when those exquisitely miserable swell moments & the daily grind of bandages/garments/MLD/exercises/appointment/stares/questions make us angry and depressed, you're there with a kind ear, good advice and a pan of warm brownies.  

    Thank you Binney & Kira  - KS1

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  • anna4969
    anna4969 Member Posts: 86
    edited February 2012

    Binney and Kira

    I too really want to say thank you from the bottom of my heart for always sharing your knowledge and guidance with me/us.  You both are always so patient and helpful.  I am grateful to have such experts at hand to ask questions to.

    Happy Happy Day to both of you :)

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  • sushanna1
    sushanna1 Member Posts: 764
    edited February 2012

    Special thanks to Binney, Kira and Carol.  But also to all the rest of you especially Jinky and Linda Lou who have shared photos, advice, stories, research and just plain commiserated with me over the years. 

    Sue 

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited February 2012
    Binney and Kira, thank you, thank you, for all you do for us, and Carol, thank you for organizing this - you're a sweetie.  Kiss
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  • Nordy
    Nordy Member Posts: 2,106
    edited February 2012

    I am sorry I am so out of it! I missed this! Happy belated Valentine's Day and Thank you for all you do!!!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2012

    Binney & Kira, your extensive knowledge about LE literally saved my sanity when two of my docs brushed off my truncal LE symptoms as not possibly being related to my tx, and declined my requests for a referral to a therapist.   I can't tell you how many times, including just yesterday, I've shared links to your posts with other women.

    You're amazing, and what you contribute to BCO is invaluable!  Thank you!!!  Deanna 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    Amen to all that has been said above!  You both are a fund of knowledge and encouragement, and cannot be thanked enough!

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  • cooka
    cooka Member Posts: 278
    edited February 2012

    Thanks Binney and Kira,

    I don't post much but I read the info you provide frequently. Just had a great workout today with my wonderful LE therapist (thanks Binney) and I feel more and more like an athlete and less like a cancer patient every day:) I realize they are not mutually exclusive, it is just my perception that needed work (along with my LE). Thanks again! 

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  • toomuch
    toomuch Member Posts: 901
    edited February 2012

    KIRA & BINNEY - Can't thank you enough for imparting your LE wisdom to me. This community needs you, so we're sooo happy that you've chosen to stick around! Many Thanks!!!

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited February 2012

    Thank you both for all you have done!!!!     I am just sitting here teary at the joy this group has brought to my life...and the information, which changed my life in good strong ways!

    Thank you!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2012

    Thank you!

    Leah

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

    This forum is one of the best examples of women helping each other that I have ever experienced. Thanks to ALL the women who have ever posted a helpful hint or offered a resource here.  Everyone's support here has changed my life for the better, too.  

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

    Best Valentines wishes and many thanks to you both!!!!

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