Best Article on Lymphedema I've Ever Read

Dawne.Hope
Dawne.Hope Member Posts: 823
edited October 2012 in Breast Cancer #1
Lymphedema is the dirty little secret of breast cancer.

No one wants to talk about it. I was assured by both my BS and PS that with only sentinel nodes removed I wouldn't get it. They were wrong. The ensuing months of trying to get someone to help me, listen to me was infuriating!

I found the step up speak out website and it was a huge lifesaver for me.

http://www.stepup-speakout.org/

I wasn't alone.

I wasn't crazy.

Through that site I was able to find a certified LE therapist.

One of the founders wrote an article this week that is the most beautifully written yet informative piece on LE that I've ever read.

Read it!

Pass it along to others.

Get the word out.

Let others know that they are not alone.

http://www.literarymama.com/columns/archives/2012/10/my-fat-arms.html#comments

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    Thank you i an checking it out
    nice to see you Dawne. look like you have been doing well. three year have passed
    Congratulations
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #3
    New Flower said:

    Thank you i an checking it out
    nice to see you Dawne. look like you have been doing well. three year have passed
    Congratulations

    Hi New Flower
    I've been away for a while but I'm doing well.

    Good to 'see' you. xo
  • Rague
    Rague Member Posts: 3,653 Member
    #4
    Well written story
    It is a well written story of one person's handling of their LE but not how all choose to handle it.

    I refuse to be ruled by LE and not live a full life. I can, and do, anything I want to do - not say I can't because I deal with LE and it won't let me. I didn't fight through 2 different rounds of chemo, surgery and rads to just roll over to LE and give up on living the life I fought for. Yes it is an 'inconvience' to deal with day garments, night garments and MLD machines but I will not allow any of that to define me or rule my life. Are some times better than others - ya betcha - but then that's what life is.

    I have a new hobby - fly fishing and it definately is a positive. Have talked with my LE guy and he agrees it's good exercise to do.

    I find it so sad that there are so many who try to scare (or at least infer to) those new to LE that living life ends with LE developing - so WRONG.

    Not all Drs are ignorant of LE! Both my surgeon and chemo Dr both noticed the start of LE before I did. They got in touch with my PA to get me into my LE guy which she did quickly.

    LE is not the end of an active life at all unless 'you' buy into that. Are there some accomadations that have to made - sure - but doesn't stop living unless that's the choice made.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #5
    Rague said:

    Well written story
    It is a well written story of one person's handling of their LE but not how all choose to handle it.

    I refuse to be ruled by LE and not live a full life. I can, and do, anything I want to do - not say I can't because I deal with LE and it won't let me. I didn't fight through 2 different rounds of chemo, surgery and rads to just roll over to LE and give up on living the life I fought for. Yes it is an 'inconvience' to deal with day garments, night garments and MLD machines but I will not allow any of that to define me or rule my life. Are some times better than others - ya betcha - but then that's what life is.

    I have a new hobby - fly fishing and it definately is a positive. Have talked with my LE guy and he agrees it's good exercise to do.

    I find it so sad that there are so many who try to scare (or at least infer to) those new to LE that living life ends with LE developing - so WRONG.

    Not all Drs are ignorant of LE! Both my surgeon and chemo Dr both noticed the start of LE before I did. They got in touch with my PA to get me into my LE guy which she did quickly.

    LE is not the end of an active life at all unless 'you' buy into that. Are there some accomadations that have to made - sure - but doesn't stop living unless that's the choice made.

    You're fortunate
    It sounds like your LE is well controlled and you're able to afford (or have adequate insurance) to get all the services you need. That's great! Not everyone has access to a therapist and the things they need to control their LE.

    Not everyone is so fortunate to have a listening ear to their doctors re this condition. Again, consider yourself blessed. Not all of us have been that lucky.

    All of us that have LE have to adjust our lives. Some have LE worse than others. I interpreted her article differently ... I thought that she handled it with triumph ... she had to let some things go ... but she wasn't willing to let it control her life. That's the point. Make the adjustments you have to make (some of us have LE worse than others) but don't let it control your life. LIVE! That's the point.

    Live your life.
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    Dawne.Hope said:

    You're fortunate
    It sounds like your LE is well controlled and you're able to afford (or have adequate insurance) to get all the services you need. That's great! Not everyone has access to a therapist and the things they need to control their LE.

    Not everyone is so fortunate to have a listening ear to their doctors re this condition. Again, consider yourself blessed. Not all of us have been that lucky.

    All of us that have LE have to adjust our lives. Some have LE worse than others. I interpreted her article differently ... I thought that she handled it with triumph ... she had to let some things go ... but she wasn't willing to let it control her life. That's the point. Make the adjustments you have to make (some of us have LE worse than others) but don't let it control your life. LIVE! That's the point.

    Live your life.

    You totally missed the point
    You totally missed the point - developing LE is not the end to an active life as inferred by the story writer all the time. It is a well written storry but not an article about LE to educate new ones. There is nothing positive in it about LIVING with LE. I have read so many of the writer's posts at another site and she is definately obsessed with what she believes LE has taken from her how much time she says has to be spent on it - not with LIVING.

    Certainly - we are all different but there is no reason to stop living life simply because LE developes. Unless 'you' just want to give up and wait to die. I do deal with my LE daily with fairly significant issues. Yes life is a bit different than it would be if I didn't have LE - have to wear garments and use Flexi-Touch an hour a day but that does not stop me from doing what I want to - riding,biking, fishing (spinning and fly), mowing/gardening during summer, tatting/crocheting, leather work, etc. The more I do the better the LE does.
    I do not see my LE guy very often any more but talk to him when time to order new garments or whenever I need to.

    Live life to the ultimate and have no regrets about what others tell you that you can't because of their own agenda.

    Yes - I am fortunate that I have great care - I'm a Veteran so my care is through VA.

    Winyan - The Power Within

    Susan
  • pinkkari09
    pinkkari09 Member Posts: 877
    #7
    Thank you for sharing :]
    This is a really neat article. I have lymphedema in my left arm, all the nodes were removed during my bilateral. Then just a couple months ago, I noticed my right arm was swelling, come to find out, my right side nodes were full of cancer, you can feel it through my skin. So now I'm at a loss for which arm to use, i just use the one with the least amount of swelling at the time.
    Thank you againg for this articlc, I have it saved, so I can read it thoroughly.
    Miles of Love,
    Kari.
  • camul
    camul Member Posts: 2,537
    #8
    Dawne
    I am so glad to see that u are posting again. I had all my nodes (19) removed with my mastectomy and have been very fortunate almost 13 years with no swelling. This is a good article.

    Hope you continue to do better. And again so glad to see you back.

    Hugs,

    Carol
  • camul
    camul Member Posts: 2,537
    #9
    Dawne
    I am so glad to see that u are posting again. I had all my nodes (19) removed with my mastectomy and have been very fortunate almost 13 years with no swelling. This is a good article.

    Hope you continue to do better. And again so glad to see you back.

    Hugs,

    Carol
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #10
    Rague said:

    You totally missed the point
    You totally missed the point - developing LE is not the end to an active life as inferred by the story writer all the time. It is a well written storry but not an article about LE to educate new ones. There is nothing positive in it about LIVING with LE. I have read so many of the writer's posts at another site and she is definately obsessed with what she believes LE has taken from her how much time she says has to be spent on it - not with LIVING.

    Certainly - we are all different but there is no reason to stop living life simply because LE developes. Unless 'you' just want to give up and wait to die. I do deal with my LE daily with fairly significant issues. Yes life is a bit different than it would be if I didn't have LE - have to wear garments and use Flexi-Touch an hour a day but that does not stop me from doing what I want to - riding,biking, fishing (spinning and fly), mowing/gardening during summer, tatting/crocheting, leather work, etc. The more I do the better the LE does.
    I do not see my LE guy very often any more but talk to him when time to order new garments or whenever I need to.

    Live life to the ultimate and have no regrets about what others tell you that you can't because of their own agenda.

    Yes - I am fortunate that I have great care - I'm a Veteran so my care is through VA.

    Winyan - The Power Within

    Susan

    Hit a Nerve
    Sue,

    I posted this article because it was an encouragement to me and I wanted it to be an encouragement to others as well.

    I thought it was informative, well-written and creative. And I think it also encourages those with LE to live their life. You see it differently and and have taken offense and for that ... I'm sorry. I only ever meant it to be an encouragement.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #11
    pinkkari09 said:

    Thank you for sharing :]
    This is a really neat article. I have lymphedema in my left arm, all the nodes were removed during my bilateral. Then just a couple months ago, I noticed my right arm was swelling, come to find out, my right side nodes were full of cancer, you can feel it through my skin. So now I'm at a loss for which arm to use, i just use the one with the least amount of swelling at the time.
    Thank you againg for this articlc, I have it saved, so I can read it thoroughly.
    Miles of Love,
    Kari.

    love to you, Kari!
    You said in a post somewhere that you live in the midwest?

    I live in the midwest too. PM me and maybe we can get together.

    It sounds like your doing the wise thing in using the arm that is least swollen at the time.

    xo
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #12
    camul said:

    Dawne
    I am so glad to see that u are posting again. I had all my nodes (19) removed with my mastectomy and have been very fortunate almost 13 years with no swelling. This is a good article.

    Hope you continue to do better. And again so glad to see you back.

    Hugs,

    Carol

    thank you!
    Carol,

    That's awesome that you've had no swelling!

    I have the swelling in my fingers and pain in my arm when I do too much or when there is a barometric change. I wear gloves and sleeves. I'm working out with a LiveStrong Trainer who knows my issues. It's been a lifestyle adjustment ... no more Body Pump 3x a week and Yoga Class 2x a week ... but I've taken up running again. My life is different now but I'm not going to let it control me. :)

    Thank you so much for your kind words.
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #13
    Dawne.Hope said:

    Hit a Nerve
    Sue,

    I posted this article because it was an encouragement to me and I wanted it to be an encouragement to others as well.

    I thought it was informative, well-written and creative. And I think it also encourages those with LE to live their life. You see it differently and and have taken offense and for that ... I'm sorry. I only ever meant it to be an encouragement.

    You have nothing to be sorry
    You have nothing to be sorry for. It IS a well written article designed to inform and educate on LE and her son. Not everyone who had LE can continue to do all they what. As we know, each individual's treatments and side effects are different. Some can do more, some can do less. We ALL need to respect where the person is at. I, too, see it as encouragement to keep trudging away, even thous she can't do all that she used to.
    The person who wrote this a champion for education and awareness of LE to patients and medical professionals. She has given me wonderful advice, as well as another lady she seems to partner up with, and has been nothing but helpful.
    Some people, it seems, have a harder time accepting where people are at in their recovery than others. It is not totally about in inactive life, it is about LE, and what it DID TO HER. Good for you if your LE still allows you to do what you want, but please give those who can't the courtesy of a little respect empathy.
  • kacee999
    kacee999 Member Posts: 110
    #14
    Bumping this up for readers
    Bumping this post up for reader information
  • cavediver
    cavediver Member Posts: 607
    #15
    Thx for posting
    it's been a while since I have been on the Board.....want to thank Dawne for posting the article....very positive..... yes, adjustments and changes for many of us who are managing our lymphedema. Some activities that require heavy weight lifting I can no longer do (like my life of cave diving)....but we can compromise, find new passions in life, and accomplish much all the same. It IS all about living and moving forward....and doing what we have to do. Thanks..... love to you all
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #16
    cavediver said:

    Thx for posting
    it's been a while since I have been on the Board.....want to thank Dawne for posting the article....very positive..... yes, adjustments and changes for many of us who are managing our lymphedema. Some activities that require heavy weight lifting I can no longer do (like my life of cave diving)....but we can compromise, find new passions in life, and accomplish much all the same. It IS all about living and moving forward....and doing what we have to do. Thanks..... love to you all

    It's nice to see you on the
    It's nice to see you on the boards, cavediver....I remember you!! Well written post!

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