How do you cope with this thing?

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KarenRB
KarenRB Member Posts: 9
edited June 2014 in Lymphedema

Hi ladies,

 I was diagnosed with lymphedema 4 months ago, 2 months after surgery, in the middle of chemo.  I had 23 nodes removed (one was positive).

 I am a young, active mom of 2.  I am (or I guess, was) a runner and an athlete.  

I've gotten a sleeve and glove, am doing CDT, MLD, and have read so much about lymphedema it will probably come out my ears!

But I can't seem to cope emotionally.  I am devastated and very depressed.  I am even seeing a therapist.

How do you cope with this thing?

-KarenRB

  

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited July 2012

    (((Karen)))  Day by day...I found my LE dx was harder to accept then the cancer dx.  I do ok when the LE is 'managed' but every time I have a flare up I go into a tailspin of depression...I am sorry you had to join this 'swell' club and hopefully someone more knowledgeable will come along soon.  I just wanted to let you know you are not alone.

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

    Karen, I'm right there with o2b on this.Frown It's a really tough learning curve, so hard to deal with the long-term nature of it. I'm so sorry you've joined our "swell" sisterhood, but we sure are here for you. There's grief to handle, and that's hard work. No way to short-cut it, but I can at least assure you that it really does get better as we move ahead, one day at a time.

    Have you had a chance to look over the "How you can cope" pages at StepUp-SpeakOut.org? Near the top of that page is a link to a page on coping emotionally. It's here:
    http://www.stepup-speakout.org/patoconnorcopng.htm

    Practical tips from other women struggling with the concrete daily challenges here:
    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm

    There will be others along to respond to your post who are athletes--serious runners, bikers, swimmers--to reassure you about your future. There are adjustments to be made, but with care and experience you'll be back to the sports and strength-building you love. Hang tough!Smile

    So glad you found us. Please tell us how we can help! Gentle hugs,
    Binney

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited July 2012

    Karen--Hang in there.  It IS so hard at first but you will gain some tools to help you keep the LE under control.  Plus it helps to visit this site and talk with others who understand what you are going through.

    I have had LE for over a year and am now feeling like I am back to normal.  I am now walking/running a lot and lifting weights.  I had to build up slowly to that but it makes me feel so much better.  I am so used to the sleeve/gauntlet that I do not think about it, putting on is just part of my daily routine like brushing my teeth.

    Check out the exercise thread here and see what some are doing.  I am not an athlete but you will be one again!

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  • ma111
    ma111 Member Posts: 1,376
    edited July 2012

    Karen, It is very hard to live with. I have to wear my sleeve/glove all day and in public when I just go to the store or I will flare up and get cellulitis again. After I was in the hospital for the cellulitis is when I started wearing the sleeve all the time. It is embarrassing, but time helps me get over that. You can wear the sleeve when you are running. Just because you have lymphedema doesn't mean you have to give up the athletic part of you!

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

    Karen, I'll chime in as well--you can return to your athletic self! One of our swell sisters is Nordy, and she is an inspiration to so many of us.  Nordy is an amazing athlete, triathlons and all, and she has steadfastly refused to let LE take that from her. 

    If you have time, read a good number of pages on the kick-LE's-butt topic.  Walking is a common form of exercise for many of us, but I think you'll be surprised by the diversity of what everyone is doing.  And it's important to point out that exercise is good for our LE, so long as we are smart about how we do it.  That means wearing the sleeve and hand protection while working out (raising core body temp stresses the lymphatic system) and for a time afterward; and especially to follow safe-for-LE weight lifting practices if you do resistance training. I posted on that topic recently in another forum and will search for that link and put it in a second post, rather than re-posting all the text here.

    Exercise makes you feel good, LE or not...and from your post I think it's clear you know all about the wonderful de-stressed feeling that comes from literally wearing yourself out.  So don't despair, you can still do it, you just have to modify your approach a bit.

    Carol

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

    Karen, here's a link to a long post on exercise and LE: http://community.breastcancer.org/forum/64/topic/783789?page=36#post_3099830

    Oh, and I forgot to say that I often stop at the grocery store on my way home from the gym, and it entertains me that the check-out folks often ask if I need help getting even a small bag of groceries to my car.  Their concern is in response to seeing my sleeve/gauntlet. I'm sure they have no clue what the issue is, and I always chuckle because of course, I'm wearing the sleeve because I was just lifting weights in the gym...that bag of groceries is nothing!

    Re-reading your post, I want to encourage you even more, to read Nordy's posts. She too is a young, active mom.  Let her inspire you--she's amazing.

    Carol

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