Lymphedema worse :( and vent about this am--

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Christine2000
Christine2000 Member Posts: 176
edited June 2014 in Lymphedema

hey all--its been a while since I've posted. After a few years of mild, stable lymphedema controlled with sleeve about half the time (and nothing at night) it went haywire about 9 months ago and I am now wearing a sleeve all the time and wrapping at night.(and MLD etc) Nothing seems to really reduce it though and I am dreading the summer. 

This morning I had a routine colonoscopy. The nurse asked me what was wrong with my arm and when i told her she said "WOW you don't see that much anymore!" when the doctor came in he also said, 'you hardly ever see lymphedema anymore these days! even with patients with many nodes out--" i said, well lucky me! but it made me feel so awful-- like i had somehow screwed up. just wanted to vent. so damn insensitive.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Aaaugh! Christine, that just makes me mad (and there isn't a sufficiently furious emoticon anymore to put in here)! What a couple of dunderheads! Of COURSE you don't see it, because you're not looking for it, and women who suffer from it are too often not even correctly (much less promptly) diagnosed! How about sending along a copy of this:

    http://www.stepup-speakout.org/essential%20informa...

    I'm really sorry to hear you're struggling with the stupid LE. Just full of nasty surprises, isn't it? Grrrrrr! Have you strategized with a well-qualified LE therapist? Soooo frustrating! Let us know what you've tried--lots of experience among the women here and hopefully together we can come up with some suggestions to try.

    As for this mornings incident (as if a colonoscopy isn't enough of an insult!), chocolate helps. Go for it!

    Hugs,
    Binney

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2014

    Christine sorry you had to encounter the ignoramus fraternity and sorry you were made to feel like it was your fault. Also sorry to hear the LE is worse. We're in more or less the same boat about that except with me, and winter just arrived, Im still no better off. Is this just LE being plain out refractory and oppositional  or what? 

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  • Betty14
    Betty14 Member Posts: 89
    edited June 2014


    Dear Christine,

                           I am just here to support you....I'm so angry at those people for making you feel like this. I too have had to endure the pathetic comments of insensitive medical staff so I have an idea of how you might feel. Though my circumstances were very different I still wanted to support you, I hope you don't mind.

     I do have a big mama machete that comes out in these situations....just give me an address and I'll show up....give them a good ol' fashioned beating. I risk killing the one brain cell these ppl share between them but hey they don't seem to use it so I don't care.

    On a serious note ....I noticed that they took out 22 of your lymph nodes so it's no surprise that you suffer from Lymphedema.....the morons should realise this.

     

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  • Christine2000
    Christine2000 Member Posts: 176
    edited June 2014

    Thanks all! Yep--22 lymph nodes, and when I woke up the surgeon said "congratulations--they're all clear!" and I said "so can you put them back??"

    I just went through 3 weeks of treatment at a facility with a good reputation--but it was pretty lackluster. different therapists every day who weren't always up to speed, blank stares when I pointed out that a particular wrap was giving me a bad rash (THAT can't be good--right??) --just a one size fits all treatment. Anyway--thank you all for letting me feel sorry for myself!

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  • Christine2000
    Christine2000 Member Posts: 176
    edited June 2014

    actually ONE had some cancer in it :)

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