LE and natural disasters

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

I was reading the NY Times today, and in "Week in Review" there is an article about the psychology of recovery--in this case from natural disasters, specifically Japan--and it turns out that people move along with recovery just fine, unless they feel they were lied to or betrayed in some way. Distrust delays recovery.

Now, it's a stretch to associate that with LE, but I know I'm still upset with my treatment team for not being honest with me, for lack of knowledge at crucial moments, and it just kind of resonated with me. So often I wish I could put LE behind me, physically and emotionally, and no, it's front and center.

And, the chronicity and the dealing with LE don't help either. 

http://www.nytimes.com/2011/03/20/weekinreview/20psyche.html?_r=1&ref=todayspaper

Some lines that struck me:

Mental distress tends to linger longer after man-made disasters, (LE results from treatment)

"To move past a catastrophe, people usually need to be able to tell themselves a clear story about what happened. And in this case the story is not so clear."  (We were treated due to serious health threat, collateral damage happened. I'm grateful yet upset.)

Once victimization becomes a part of a person's identity, the disaster story may never end.( I'd love to put bc and LE behind me, but LE is a daily part of my life. Not to even get into the wounds to the psyche from having cancer.)

So, I don't want to in any way minimize the horror of what's happening in Japan, but I'm always searching for a way to put this condition into perspective, and why it tends--for me--to get me "stuck" emotionally, and this story just made so much sense.

Kira

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Comments

  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited March 2011

    Thanks, Kira!  That makes sense to me.  I do feel betrayed and badly treated by the surgeon who did my surgery, and that makes it all so much worse.  If only he had taken my concerns about LE seriously and done a good job of the surgery.  But he lied about the nodes he took, and he put me more at risk by saying I hadn't lost any nodes and shouldn't have any problems...even the ones I clearly had.  Makes moving on that much harder!

    Dawn 

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  • Marple
    Marple Member Posts: 19,143
    edited March 2011

    What really gets to me is people in my life minimizing LE and it's affect.  Interestingly it's family who seems to do that.  I'm almost getting past that disappointment too.

    I sometimes wonder if we are ever able to truly move on?

    Edit to add~Kira, when I read the title of this thread I immediately thought.......how many women in Japan are dealing with LE AND now have lost everything.  Sigh.......some things are just to big to comprehend.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    The article discusses the risk of developing a "victim" mentality in the wake of a "manmade" disaster, and I find that interesting. I think (I HOPE!Kiss) what we do for each other here is to cheer one another on to feeling whole again -- at least most of the time!Wink We are NOT victims, we're strong and resourceful women. That, at least, is what I depend on you all for. It's always so cheering to me to see so many women determined to find and do what's best in order to return to functioning. Even in spite of the ignorance or indifference of the medical community we all were putting our trust in.

    Thank you to all of you for your courage and grace -- it's all so healing.
    Binney

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  • moogie
    moogie Member Posts: 499
    edited March 2011

    I think Sharon50 touches on a cord that really rings true for me: only other women with LE really understand or can relate to our experiences. That is the incredible value of this forum.

    Relatives/friends cannot really accept that a mosquito bite,airplane ride, or incidental cut can land us in a situation that may take weeks to resolve and create new problems on a day to day basis. Not to mention expensive medical therapies.

    People are just really reluctant to see that fragility in balance. In any way. Even situations like severe allergies remain a mental leap for some: a friend was desperately allergic to celery and was fed some by another "friend" in a dish at a party. When she had a seroius reaction that involved her airway, the distraught pal said: "Well I always thought you were just making a big deal about it!"

    Having the understanding and support of this LE community makes all of this stuff much easier to bear!

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2011

    I so agree with everything written here...I had a woman at my church tell me that her daugher (a nurse) said LE was very common and it was 'no big deal'.  I agreed with her, and added, "of course, it becomes a big deal when it's your arm."  She did not find this amusing.  I did not give a hoot.

    I love what Binney wrote.  Advocating with my doctors and being willing to talk with people about my LE has been incredibly freeing for me. I am not a victim.  Once I accepted that this happened to me and quit trying to place blame, I was so much happier.  Bad things happen to good people all of the time.  I'm not special.  But I can use my experience to try and help other people - I can help those women who are already dealing with LE, and those women who are at risk to avoid it.

    Being a victim means I have no solution and power.  That ain't me. 

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited March 2011

    You said it Suzybelle!

    Dawn 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Hear! Hear!Laughing

    (Suzy, the "no big deal" must have felt like a blow to the gut -- what a great comeback!)
    Binney

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2011

    Binney, it was a blow..and that was during a time when I wasn't able to handle LE stuff nearly as well.

     Thankfully, most people are much nicer than that!!!!

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited March 2011

    I would agree with you Kira.  My surgeon always asked about any new swellings and the possibilities of LE.  However I am still angry at my oncologists staff because his NP tends to brush everything over and say that is not a SE of out treatment. Give me a break.  I sometimes think I have more medical knowledge than she does.  Just last week she told me my knee pain was not being caused by Femara. ummm it's a common SE says so on their web site.  Even my Dr.'s nurse who had BC with me told me 5 minutes earlier her knees were killing her from the Femara.  Sorry for the rant but I do think we get brushed off to the side because they don't know what to do for us.  Just listen is all I ask and tell us a wee bit more and what we can do about it before it becomes a problem.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    I agree Kitty: we can handle this stuff--we ARE handling this stuff, just don't lie to me, or not take the time to take me seriously, or inform yourself enough to intervene when it's important.

    I accept that bc happened: not happy about it, but treated it and deal with the changes it's caused, it's the fact that my surgeon did some things that put me at extra risk for LE and didn't listen to my concerns, and actually told me that "LE is like diabetes: it's chronic, I don't treat it, just go to the therapists." Well, you caused it, so I'd hope you'd want to minimize that fact in the future.

    I agree with Suzy about feeling raw about it--and it's so amazing to watch you--Suzy-- move through the rawness and come out feisty and funny and a force to be reckoned with.,

    Unfortunately, I still resent LE, and the big deal it is when it's your arm. And I so want to give up the emotional baggage of being pissed off at the surgeon and rad onc ( ironically the surgeon now shares patients with me ALL the time. And now dictates that she discussed LE pre-op. Hmm. Wonder why she started to do that??)

    Don't deny my reality, it makes me furious.

    I agree Kitty, when health care professionals are stumped, a common reaction is to blow us off, deny it or blame the victim. It takes a secure health professional to admit they don't know about something but are willing to help--like my primary, who writes all my referrals and gives me wonderful support.

    I just feel that breast surgeons and radiation and medical oncologists should know about LE--it's a common problem in their patients.

    Enough of a rant.

    Thanks for being here.

    Kira

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  • Marple
    Marple Member Posts: 19,143
    edited March 2011

    It feels good even to read someone else's rant!

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited March 2011

    I handled my bc pretty well until the radiation onco burn the cr@p out of my skin. She refused to see me on one visit, they forgot about me on another visit. & then told me to go and be happy.  That's when I got angry. Angry that no one told me they would burn my skin, told me that after the fact. Scar boost burnt me so bad it still has not healed after 2 1/2 years after radiation.  Now I have had cellulitus for the third time, second severe bout. Now I'm looking to have a scar revision and have to have hyperbaric treatments for 6 weeks before & after the surgery.  I accepted that I had bc & the treatment. No one told I would still be suffering 3+ years later.  Now I have LE, but I can handle it at this point in time.

    My solace now is to be able to come here and help others.  I had no one to compare notes with back then.  Sure wish I had know about this site back then.  I've learned to trust my gut thanks to all you ladies. NJ

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  • nurseronda10
    nurseronda10 Member Posts: 209
    edited March 2011

    I am trying so hard to not let LE get me down.  I went to a third therapist yesterday who seems to be knowledgeable.  I told her I wanted to do everything that I did before BC which is running, cycling, gardening, weight lifting, and weedeating (we have 41 acres and a lot of fence rows).  She said I probably would need to leave weedeating off.  Has anyone else been told you cannot do everything you did before?  

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Ronda, what we are and are not able to do with LE is so varied. I've given up some activities, made adjustments to others, and still occasionally do some that aggravate the LE and then end up spending a few days getting it back in control. We all make our own choices and compromises.

    Before you'll know how the weedeating will affect YOU, individually, you'll need to get the LE into excellent control and then begin to experiment with the activities you want to introduce, preferably one at a time so you know what's affecting what.

    So, what happens if you find that, even with good self-care and wearing your garments, weedeating makes your arm swell? It's still not an absolute "no," but it does mean you'll need to get even more creative. Instead of just wearing garments, you can try wrapping (you can order sturdy work gloves in a size to fit over your wrapped arm). You can break up the work into 15-minute segments, doing other activities in between. You can do self-MLD directly before and after your work sessions. Certainly you can break for water and a few deep abdominal breaths as you're working.

    This is hard to get our heads around, hard to accept the inconvenience and frustration, hard to grasp that "chronic" means we'll never get a vacation from it. But you're doing so well with seeking out the help you need and insisting on decent care, and with the skills you can learn from a good LE therapist you'll soon be mastering the self-care challenges and moving forward with your life.

    Tell us how we can help. Gentle hugs,
    Binney

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2011

    Kira, yours and Kitty's rants remind me of what really ticks me off about my LE.  It makes me nuts when a medical person (who should know better) blows it off as nothing.

    Ronda, please hang in there.  Yeah, LE really sucks, but it gets better, I promise.  I have had to give up some things I truly loved, but I have taken up some new stuff and love it just as much.  Life is different.  But it's still good.  Kiss  I'm sending you a cyber-hug!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Ronda, My error was to retreat too much--I was so scared of making the LE worse--I wouldn't fly, play tennis, kayak, etc.

    Now, it's almost 3 years--mine showed up in the first month after surgery--and I survived breaking my LE hand and got the LE back under control and have flown a few times, and am venturing out.

    Just today, my PT asked if I'd try tennis again, and I don't think I'll play a game--it's too unpredictable, but I'd hit some balls with my family.

    It has led me to new things and adjustments. 

    As Binney said, everyone is different--so many of the women on who post here are such athletes and so active.

    You'll figure it out, but it sure does complicate things. Of course it gets you down sometimes. Please let us know how you're doing with all that land.

    Suzy, as always, said it so well: it's different, but still good.

    Kira

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