March 6 is LYMPHEDEMA AWARENESS DAY!

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Binney4
Binney4 Member Posts: 8,609
edited June 2014 in Lymphedema

I'm not making this up. It really is. So let's all plan to make somebody aware of LE. Like say, your local newspaper. Or a radio station. Or your doctor's office staff. Or your family members who may not be entirely on board.

If any of you have ideas to share on how to celebrate (aside from chocolate, of course), please post here and let's inspire one another to get the word out!

Go for it!Cool
Binney

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Comments

  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2013

    waterballoons?

    Ok seriously I know not everyone loves the pink ribbon, but it is recognizable, we need some way to modify it to include LE I think....like upside down? so it looks swollen, plus its the downside to cancer treatment...

    I am sure you all now officially think I am nuts

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2013

    Cookie, I've long thought about having balloons printed with an explanation of what LE is, to hand out to people who ask about my garments or wrapped arm. They'd have to blow it up to read it.

    So if you're officially nuts, I guess I am too.Laughing
    Binney

  • carol57
    carol57 Member Posts: 3,567
    edited February 2013

    You are both fabulously, creatively funny!  How about printing LE info on one of those magic sponges that are microscopic when you buy them, but get huge when wet.

  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Well, I have been incredibly lucky in almost completely reversing my LE. However, I do still wear a sleeve and gauntlet when flying or exercising and anytime the arm feels funky (like today actually). So, I will certainly be sporting my sleeve on the 6th and although I detest the pink ribbons, I may decorate the sleeve with a pink ribbon and see what happens.

  • CherylG711
    CherylG711 Member Posts: 102
    edited February 2013

    I will be flying that day so I will spread the word!

  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    cookie

    I actually think the upside down  pink ribbon is  a much  better  representation of  what I will call " BC TX INDUCED"  LE than the butterfly!  It would get more attention as well- people would constantly be trying to ' correct your pin' and then you could explain.

    I wish this could be our official logo.  I have been rather frustrated with my area medical ctrs and hospitals of late who keep telling me that they have services for BC.  BC is NOT LE!

    I love the idea of the water balloons - fluid filled.

    I spoke to someone from the ACS last week and asked for their help to promote awareness , but they pointed out that they do have ' that brochure'.  Yep, they do!  ( Sure wish my BS had given it to me   )

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2013

    Thanks for the head's up Binney. I will be emailing my local newscasters. You know I fought the heads of the anesthesia department over her misconceptions of LE. Because of all of you, I was armed with lots of facts to shoot her down.

    I also handed out stepup-speakout literature to the head of the surgery department of the clinic that I go to.

    I am so NOT afraid to go head to toe with medical professionals over their lack of knowledge.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2013

    Thanks for the head's up Binney. I will be emailing my local newscasters. You know I fought the heads of the anesthesia department over her misconceptions of LE. Because of all of you, I was armed with lots of facts to shoot her down.

    I also handed out stepup-speakout literature to the head of the surgery department of the clinic that I go to.

    I am so NOT afraid to go head to toe with medical professionals over their lack of knowledge.

    Oh, and the surgeon I had for my appendectomy told me that he learned that 10% of those that had sentinel nodes removed get LE. I don't know where he got the information from. But if you figure that so many of us are mis and underdiagnosed or don't know we have it (like me, until I read about it from you fabulous ladies), the total is probably higher.

    I think the idea of waterballoons is FANTASTIC. That is how I describe my LE sometimes. Like  you are squeezing a waterballoon and how it gets bigger and the balloon "skin" gets tighter.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    Butterfly????

    Maybe while it is wrapped up in the cocoon?

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Yep, butterflies:
    http://www.stepup-speakout.org/History_of_Lymphedema.htm

    Definitely must have something to do with being wrapped up in a cocoon. At which point it's not much better than a very fat worm. Hmmmm!Tongue Out
    Binney

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    since we like the water ballon element and upside down pink ribbon wrapped around a blue water drop (isn't blue our color?)

    I suck a graphics, I wonder if someone could take a shot at it

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    just googled it, upside down pink ribbon is sort of a thing for young survivors who want a better test, or to reflect all the tears

    but around a drop of water maybe is unique

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2013

    My mammogram is on 3/6: wonder how that date was chosen - do the numbers symbolize something? Probably not incidence, maybe they refer to the feeling that the affected limb is twice as big as "normal"...

    Anyway, the American Cancer Society TLC catalog shows a turquoise ribbon pin for LE. The NLN version is also a pale teal color, with a silver butterfly (as is their wristband). Water balloons are a creative twist!

    I like the letter to the local newspaper idea. Since it's been months since Pinktober and the annual spring awareness/fund raising walks are still several weeks away, this is a good time to get a message out on cancer treatment side effects.

  • melmcbee
    melmcbee Member Posts: 1,119
    edited March 2013

    Thats awesome. The date is the same date that I adopted my grandbaby. I will always remember it. I like the teal ribbon.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2013

    It's a little confusing because the ACS describes teal for ovarian cancer but it looks more like a jade green in the picture. Dark blue is for colon - shouldn't it be brown? I do understand black for skin (melanoma)...

  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Think I am going to brave all the nosey people and not hide my sleeve and glove for awareness day. This could have a two fold purpose. One...educating the community and two... maybe I will finally get over my vainess/shyness and show the world that I wear ugly medical gear. If it turns out for the good then I may come out of hiding for the whole week just to extend the awareness day.



    So I will be in the big city walking this week, weather providing....I am going to wave my glove in front of everyone encouraging them to inquire. Come on you nosey people....it's your chance to ask me and not get the answer "shark bite".

    Has anyone got a brief explanation about LE for me?


    Should I say I got a condition called Lymphedema from cancer surgery? They took out my lymph nodes so I could be cancer free but at the same time not having lymph nodes means you collect stagnant fluid in your arm and can't drain it. The sleeve and glove keeps my arm from collecting too much fluid. I would not like to be too wordy, if anyone has a briefer explanation or one that is clearer please fire away!
  • Estel
    Estel Member Posts: 3,353
    edited March 2013

    hugz - I tell people, "Complications from surgery" and leave it at that.



    Love the water balloon idea and what I'd really like to do on LE awareness day is fill them and throw them at every doc and nurse who have poo poo'd my concerns and my experience with it. ;)



    Seriously, though, I noticed that the "Lymphedema Guru" on Facebook shared the article, "My Fat Arms" a couple of days ago ... I am going to share that ... Like his page on FB to see it. I think it captures our experience of living with LE so well and helps people understand ...

  • Momine
    Momine Member Posts: 7,859
    edited March 2013

    Hugz, I felt self-conscious about the gear in the beginning. However, it helps me and last summer I wore it almost all the time, on PT's advice, because it gets really hot down here. It being summer meant that covering up was not really an option most of the time.

    If people ask, I tell them I had surgery and lost lymph nodes. Then they ask how much longer I need to wear the sleeve (thinking it is a short-term, post-op thing) and I tell them that the problem is permanent, although I am lucky enough not to need the sleeve all the time. Then they either ask if it hurts or start telling me all about the tennis elbow they have and asking if I think a sleeve might help them, lol.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013
  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    we are here! Horton the elephant, spokesperson for national lymphedema awareness day! He's blue, but he ain't no butterfly!

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    And he appears to have "trunkal" lymphedema! (Plus maybe some ear LE?)
    Binney

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    Binney!! LOVE IT...Truncal!!!!Tongue Out

  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    I explained LE in a Facebook post today, because lots and lots of my friends and extended family never see me and have no clue I wear my badge of LE courage, aka the sleeve. I don't know if it has made any difference in awareness, but it cannot hurt.

    I LOVE the truncal LE for the elephant.  Binney, you are so quick!!

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    We actually do have an elephant with trunkal LE on the StepUp-SpeakOut site, but he's mostly hiding out with a few other LE-type cartoons, so as not to upset anyone who's not at a place to see anything remotely funny about LE. He's here:
    http://www.stepup-speakout.org/images/Truncal cartoon01sm.jpg

    LaughingBinney

  • Nitocris
    Nitocris Member Posts: 187
    edited March 2013

    Binney,

    The elephant with "trunkal" LE is hilarious!!!!

  • Marple
    Marple Member Posts: 19,143
    edited March 2013
  • Marple
    Marple Member Posts: 19,143
    edited March 2013

    P.S. I hope he doesn't have to wear compression garments.Tongue Out

  • Nitocris
    Nitocris Member Posts: 187
    edited March 2013

    It says:  Lymphedema is a disease which gets very little attention;  lymphedema, the black hole of health care?  You are not alone;  6th March, international lymphedema awareness day.  Posted it on my FB and sent it to everyone I know, both "patients" and professionals.  

  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2013

    The black hole of health care, love it.

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Nitocris, that's just stunning! Man, it's so true about the black hole, but what an encouraging message! Brava!
    Binney

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