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Estepp Member Posts: 2,966
edited February 9 in Lymphedema

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.


I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......



  • Sido
    Sido Member Posts: 55
    edited October 2010

    All I have to do is look at my fat freaking hand and fingers to get depressed.  I'm a college professor and I write for a living but I'm forced to learn to write with my left hand and typing makes me swell.  WTF!!!  Everything about BC made me fat and ugly, but LE is a slap in the face every freaking day.  I hate sleeves, I LOATHE gloves with the white hot fire of a thousand suns.  Gloves are hideous, uncomfortable and unbeleveably expensive ($160 compared to a gauntlet at $20).  End of rant.


  • Estepp
    Estepp Member Posts: 2,966
    edited October 2010

    RIGHT ON Sido................ THANK YOU..............

    Come on girls........... give us your best pissed off self....... We seem to need it....SIDO said it soooo well............ LE is an EVERYDAY SLAP IN THE FACE!

  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010

    Oh, I hate it so freaking much.  This morning my arm looks like a watermelon.  I have done EVERYTHING right.  The weather is cooler...I just don't understand it.  And of course, it hurts like a son of a b#tch.  So I say, in response to my sweet husband's question of how my arm is doing..."I need to come home and get on the machine and wrap it - it's really bad for some reason." 

    He says, "F#$%ing Lymphedema", in a very disgruntled tone of voice.

    I could not say it better myself.  I get so sick of it.  I think the worst part is every day I'm reminded of freaking cancer.  I can't get away from it thanks to my big fat arm.  And my next to fave part about it is that nobody even knows what the hell it is.  So I get the same questions over and over, "What's wrong with your arm?"  "What'd you do to your arm?"  Blah blah blah.

    I'm going with DH tomorrow to a reunion with total strangers.  I will know no one there.  I bet I will get at least 5 questions like that.  It makes me want to stick a pen in someone's eyeball.

     Okay.  I'm done.  And I feel better.  Thanks, ESTEPP!!!!!Cool

  • Marple
    Marple Member Posts: 10,154
    edited October 2010

    My arm has been bothering me more the last month too.  I have no idea why.  It does get so discouraging.  I think a good rant now and then helps.   I was getting used to having one breast and actually could 'forget' once in a while I had b.c.  But this darned LE never lets me forget.  I hate it.  How sad is it when a good day = a good wrap?  Blech! 

    Great vent Estepp.

  • kira
    kira Member Posts: 659
    edited October 2010

    Wow! Some amazing eloquence here: hating gloves with the white hot fire of a thousand suns--you nailed it Sido.

    It's pink October, and there was a photo of courageous women running to fight and celebrate their survivorship, and not ONE had any compression garments on.

    We hide. Because we are the group that no one wants to join.

    So, along with the general suckiness of the constant limitations and need to manage LE is the fact that we're the LE lepers. 

    And we do it all right, and our bodies don't respond--what an insult.

    I wrote this editorial for an oncology nursing journal about how I feel about LE, and it started off with "I am inconsolable, due to a flare." Sometimes I'm sad, and sometimes I'm mad.


  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010

    Kira, you are so right on the money.

     I went to a BC support group twice and the first time it was, "What did you do to your arm?"  This - from women who were BC patients or had had it.  Then one woman stated, "Nobody gets that anymore."  The second time, the women looked at my arm with the compression garments on and were literally very standoffish.  It was almost like they were worried about catching it from me.

    And yes, I was very much aware that I was the pariah.  It was the most uncomfortable and disappointing feeling...I had hoped that it would be a place of support and understanding.

    The only place where I really get that is here, and I thank God for this site. 

  • annadou
    annadou Member Posts: 46
    edited October 2010

    OMG just what I needed

    What I hate even more is the breast lymphedema and who will manage this MLD when I am too old to cope-but then again I probably wont get too old will I?

    Nothing I do improves my swelling it always comes back-I wear the glove and the arm thing -I wear a jovipak at night with extra support jovijacket-do the massage BUT it never goes and I suppose it never will

    Nobody gets the picture about lymphedema do they -I have even been told that I shouldnt wear support on the arm as it reminds me of the cancer??? I supposed to ever forget it???

    Sisterinspirit-that wailing wall sounds GREAT

    I am at the anger stage of bereavement and I cant promise that it wont develpo into depression

    Love to all


  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010

    Anna, I can so relate.  I am seeing a therapist because of stupid LE.  And you are so right - people just don't get it.

    If one more person asks me what happened to my arm, it's going to get ugly.  And my fave response (NOT) is when they say in a disbelieving voice, "I've never heard of that."  I want to say, "Well, yeah, I just made it up you #$#$@$#."

    LE has made me very angry and fiesty!!!!Tongue out

  • Marple
    Marple Member Posts: 10,154
    edited October 2010

    LE makes me feel defensive when people ask about what is wrong with my arm.  (And I hate when I feel that way.)  I'm tired of explaining to people who for the most part could give a crap anyway!

  • mmm5
    mmm5 Member Posts: 797
    edited August 2013

    Hi Ladies 

    I am just in awe here and so empathetic to all of you, I read this thread because I saw Laura (estepp) post and was interested and my heart just go's out to you all. If it's ok I would like to ask a couple of questions.

    Why do some women get LE and other's not? ( I had nodal removal but have not had LE)

    Is there ANYTHING that makes it better for you?

    Do you have some days where it does not bother you at all?

    I hate this for all of you as I think we all deal with so much aftermath of bc the lack of hormones and the SE's have just eaten at me somedays but wondered if you all get any relief from any of this and if there are any specialists out there that have achieved any results in helping to heal your LE, has anyone ever tried acupuncture (not sure if it would help, but just throwing it out there)

    My thoughts and prayers are with you on this? bc just keeps on giving and I hate it for all! 

  • kira
    kira Member Posts: 659
    edited October 2010

    mm5--unfortunately, we could write a book in response to your questions--no one knows why some women get it--there are theories about genetics, about trauma to the axilla during and after surgery, infection predisposes and so does the technique of the individual surgeon.

    Everyone's lymphatic system is different, and some can handle the insults to it, and for some of us, it tips us over the edge into LE.

    Standard treatment is massage, night and day compression, and unfortunately, it can be a progressive disease, despite all we do. The biggest risk of getting severe LE is having mild LE.

    Unfortunately, I don't think women and men who don't have this can really fully understand the burden that it places on us.

    We're pariahs, and it's a disease that few know about--especially health care providers. It's way more than a swollen area of our body: it's a disease and we have to treat it both for function and to decrease our risk of life threatening infections.

    Suzy: I used to work with this gentle woman, and one late night at work, she came into my office and said "Don't you ever wish you had Tourette's so you could say--get f@@##k out of my exam room! and blame it on the disease?" And she was/is the model of decency. You are showing great restraint.

    Once Otter said to go the Southern route and say "My that's an awfully personal question, honey, I'm sure you didn't mean to pry." Or something like that.

    I just say; It's a complication of breast cancer surgery that I had--tends to shut them up.


  • sisterinspirit
    sisterinspirit Member Posts: 29
    edited October 2010

    Fake emotions.  Suzy, you are so right.  I am coping, but... The face I put on for others  is that of a strong, capable, caring person.  My sleeve is part of me, so get over it.  Many days I am joyful, see good all around me and know how blessed I am.  But then,.. there are those times I am Alice going down the rabbit hole. Every single day having to deal with LE, massage, exercise, washing gloves and bandages, pain, on and on.  And worst of all, loss of function and my world shrinking.  Raking leaves, forget about it.  Pushing a shopping cart, getting tough. Trying to stay balanced in an every changing world.  Suzy, can I come over and eat brownies under your bed, after I  throw a couple of plates against my wailing wall in memory of my weekend wonder LE PT who let my LE  progess to stage 2?

    Thanks Estepp.  You did good here!


  • moogie
    moogie Member Posts: 42
    edited October 2010

    AMEN to all that has been said.

    I waited over 2 months for 3 weeks of scheduled therapy. I had one session, before which I explained that NOTHING THAT WAS NOT COVERED BY INSURANCE was to be done. 24 hours later? Therapist says, " well I don't understand what they mean by the term modality". So I have been waiting 2 weeks for this to be clarified, my first session will probably not be covered because she did stuff she was not authorized to do ( and I will not pay for it ) and my axilliary web pain makes me want to punch a pumpkin.

    Now I feel better. THANKS!!!!


  • kira
    kira Member Posts: 659
    edited August 2013

    I've got low hopes that HR 4662, the LE treatment act bill will go anywhere in Congress--know why? The PT's are against it, because it allows payment for OT/RN/LMT's and they feel threatened! And they have a strong lobbying group.

    I recently attended the NLN conference, and got this amazing pin for the act (created by an amazing artist who posts on these boards) and heard from all the PT's about how they were going to lobby against the act. Guess they don't take the hippocratic oath in PT school....

    Cut me a break!! How about taking care of the patient??

    I see a highly trained LMT, and pay out of pocket--insurance won't cover her because she's not a PT/OT. Yet, she's LANA certified, Klose and Vodder trained, and known nationally (I discovered at the NLN.) My luck she moved out of NYC to be closer to family.

    Moogie: I met with Jodi Winicour, AWS guru, and she suggested a few stretches: 1) Bend your elbows and link your hands behind your neck--try and keep the arms from drifting forward, bend to each side and also twist, hold each stretch to point to pull, but don't hurt, 2) keep elbows straight and raise arms overhead and if you can, link your thumbs in a yoga stretch, 3) keep elbows straight and raise arms up from the sides to overhead--watch in a mirror to make sure you're not bending at the elbow, 4) lay on the bed, raise arms over head, bend your knees and let them go to one side and then the other--feel the stretch in your side, also do the knee bending with arms linked behind the neck and pressing the elbows into the bed.

    There's a special place on the wailing wall of broken glass for all the PT's who have given us substandard care. In their defense, in no other disease are they left responsible for determining the treatment--without MD supervision. Also, their model is of acute disease, not chronic disease management. 

    I see so many patients whose LE is out of control, and they say "But I went for therapy!" Yep, and after it was done, there was no follow up scheduled or suggested. Try that with diabetes or high blood pressure.

    But, heaven forbid patients should get LE care covered, and the PT's lose their authority to be the sole providers of LE care.


  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010

    Kira, I am hooting over the tourette's comment.  I have been so tempted when asked about my sleeve/gauntlet  over and over and over again to say something REALLY ugly about how I injured my arm shoving it up his/her momma's a$$ but that is SO not Southern.  My own mom would kill me, so I haven't done it yet.  But I'm sorely tempted.

    SisterinS., I so feel your pain.  This morning at 12:15 a.m. I was removing my bandages because I must have gotten them too tight and my arm was KILLING me...I think they've lost their 'stretchiness' so I'm throwing them this normal?  Binney?  Kira?  Anyone?  Anyone?  Bueller??? Anyhoo, I have some new ones I will use tonight and see if I do better.

    So at 12:15 am I am taking the s.o.b.s off and my arm is burning and hurting and I am thinking that I am already sick of dealing with this shit and it's only been 6 months...and I have a lifetime of this.  Yay me.  So, girl, come on over and crawl under the bed with me and we will eat brownies and halloween candy until we hurl.  Tongue out

    I have to push the shopping cart one-armed...and I didn't buy pumpkins (my fave time of your is fall) because I can't pick them sweet husband bought me two today.  LE sucks but I am so blessed to have him.

  • Marple
    Marple Member Posts: 10,154
    edited October 2010
    Suzy, I usually replace my wraps after about 6 months.  I find after a washing they gain a bit more stretch.  My therapist suggests keeping the old ones and use them for something where they might get really grimey and dirty.  Like painting.  Hahaha, ya right, as if I'm going to paint.Tongue out
  • kira
    kira Member Posts: 659
    edited August 2013

    Suzy, I label the ends with a sharpy, and my LE therapist says if you have two sets, and wash them weekly, and alternate, you should get a year out of them.

    I show them to her to check the stretch.

    I do save the old ones, I have no clue why.


    I think my short stretches last longer, because Polly--my LE therapist--does not believe in bandaging with tension. You apply the short stretch with enough tension so it lays down smoothly, but no extra pulling, and for more compression, you add additional layers. There was a study presented at the NLN--I'd seen it before--where they compared higher compression bandaging against lower compression--and the lower compression was more effective. And you likely won't wake up at 1 am in pain.

    The first LE therapist I saw put the bandage on with extra tension--she tugged on it with each roll--and it was so tight that my fingers turned purple and I couldn't stand it for more than an hour.

    And she didn't use a finger wrap, so my hand looked like Minney Mouse with an extra finger...

    I've been fighting this chronic infection next to my nail--a paronychea that I've had for years, of course on my LE side--and it flares into an acute infection at times, and with the most recent bout, I've been very careful not to wrap with too much pressure, because I don't want to trap fluid in the tips of my fingers.

  • binney4
    binney4 Member Posts: 1,466
    edited October 2010

    Suzy, I hope you have a king-size bed and a very large pan of brownies -- hang on, we'll all be right over!

    Annadou, "don't wear compression because it reminds you of cancer"?!! What screwball would come up with something like that! In what way does a sore, swollen arm NOT remind you of cancer? Aaaaaaugh!

    Sido, I too "LOATHE gloves with the white hot fire of a thousand suns," I just never would have found the words to express it. Thank you! I'm the little girl who ditched her brand new Easter gloves before we even arrived at church. Made my mother crazy, but I simply couldn't stand them. Still can't, but now they're 24/7, and the "joy" of getting new ones every six months makes me cry.

    I wanted to share this website with you, as it has a very helpful workbook called Handwriting for Heroes, for learning to write with your non-dominant hand.
    I also got a left-hand-only keyboard, and it took about three months (and some tears, and some throwing of desk detritus) to get back up to my previous typing speed. Now it's second nature and when I'm faced with a regular keyboard I have to hunt and peck!

    Kira and Sharon, I saved the old ones too for a long time, and then I realized one day that there was no use in the world for them, and it felt great to toss them out. If you're going to paint the house you doggone sure need the best compression you can get, not the old ones that don't work any more -- or better yet, just save up your pennies and hire the painting done. Either way, the stretched out bandages can be eliminated from our lives without regret.

    Estepp, I am so sorry we are all struggling with this, and grateful that you're able to help us all express it. Like you, I'm enraged by the whole ugly mess, and seeing as how I can't get away from this rotten condition for even a day, I've thrown myself into advocacy and awareness efforts -- doctors, nurses, our fellow bc Sisters, the public in general. It's one way to channel all the rage and the daily, daily frustration, and I even believe it helps in some small ways.

    Be well!

  • Marple
    Marple Member Posts: 10,154
    edited October 2010

    Binney, I'm too cheap to throw them out.  I was able to use one to bandage my dog's leg one time.  LOL, I think I washed it, rolled it back up and added it to my stash. 

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010

    Can I join in the rant... 

    I HATE LE and for me even though I am getting treatment and have been since Feb I am constantly second guessing myself, am I over reacting?  My LE is not visibly noticible since both arms and my trunc  are involved and the swelling is very mild, but it sure is painful.  I have been reading this forum for almost a year and don't feel like I 'have' LE bad enough to complain so I don't post.  

    I used to be this person who could do anything.   Paint the whole house inside and out in one weekend, Sure! Rip up the carpet and lay tile, Of Course!  Landscape and install a sprinkle system, You Bet!!! Now I cannot even sweep and mop my floor in one day without paying for it for days with increase pain and discomfort!!! If I try to fold more then one load of laundry in one day, I hurt.   If I play Wii with the kids, I pay for it.   I have gone from SUPER WOMAN to a mini mouse scared to do anything.  Even going to my daughters soccer games cause me discomfort because of the AZ heat, no matter how much I stay in the shade.  

    I am PISSED OFF and not very compliant anymore since the MLD doesn't do a whole lot for me.  I do wear my sleeves and gauntlets daily and have tried wrapping but cannot seem to get the hang of it and have to unwrap with a few hours.  The only way I can sleep through the night is if I take an Ambien.   My pain and discomfort is so out of whack with my mild LE that now my doc's are talking PMPS and I have an appointment with a pain management doctor next week.  

    I am only 39 and I WANT MY LIFE BACK!!!!!!

  • toomuch
    toomuch Member Posts: 254
    edited October 2010

    OMG, this thread is just what I needed. I say all the time the the LE is worse then the chemo that I'm still getting! My biggest problem has been with my surgeon. He told me at my first followup after my axillary node dissection that the ropes in my armpit were normal!!!! Fortunately, I knew that it wasn't and I got a referral for lymphedema therapy from my regular gynecologist. I'm still on the waiting list to see a LANA certified therapist but have been seeing one that is certified through another school. I've been getting therapy for 2 1/2 months and my range of motion is better but the cording is still there! I have also had LE since about 2 weeks post-op. I  also have a perisistant swelling in my back that developed after my drain was pulled. It looks like an easter egg on my back and I went back to see the surgeon about it 2 weeks ago. I was wearing a sleeve at the time and he told me that I couldn't have LE because it was too early (2 months postop.) Does this man have any business treating women who have breast cancer??? I get less questions when I wear my wrap then my sleeve. It seems people just think that I have a broken arm! Go figure. Thanks for creating this thread. It feels good to vent.

    I've been reading a lot about lymph node transfer. The procedure originated in France but there are several surgeons doing it in the US now. It gives me hope that one day it will be used routinely and that the twice daily massage, exercises and wrapping won't be needed!

     Kira, thanks for posting the specific exercises. They are different then the ones I've been doing and I really felt the pull on my cords when I did them. Maybe they will help!

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited October 2010

    do you have to have swelling to have lymphodema.  My arm is hurting, feels like theres a rope running all the way to my wrist, and under my wrist is so sore, it hurts when i lay in on the keyboard to type.  I guess i need to do some research.


  • kira
    kira Member Posts: 659
    edited August 2013


    Of course you have every right to post on this thread, and I'm so glad you did! I know that we compare ourselves and decide if we have a "right to complain", but with LE even "mild" swelling sucks big time, and impacts all of us. Especially with the pain you're having, this is a serious problem for you.

    I know Binney gets furious when she gets blown off with comments like "But your arms LOOK normal." Yeah, because she works at it 24/7.

    I totally understand the concept of the shrinking woman: we swell/our world shrinks. I hate having to give up things.

    One of the lecturers at the NLN (someone well known to us, who means well, but doesn't get it on some level), gave a lecture on LE and actually wrote in her power point, that successful accommodation to LE means "giving up". I was standing in the hallway when the next presenter, a woman who has LE and studies it, confronted her and said "As a person with LE, I would never counsel women that they need to give up."

    The reality is that we do give up  a lot. Spontaneity, strength, independence, and lots more.


    my LE came on 3 weeks after surgery: I had cording--lots of it, and went out on a hot day and got bug bites, and my hand swelled up, and it never went away. 

    It makes me want to scream when our providers--and for some reason breast surgeons are particularly prone to this--deny our reality. "None of MY patients get LE." Of course they don't, because you refuse to acknowledge it.

    I hope the stretches help. Here's a link to a page we put together on axillary web:

    Saw a lecture on lymph node transfer, and unfortunately, it doesn't seem to be the miracle cure. But they are working on inflammation, genetics--hopefully there will be other options.

    Laura: it sounds like you have cording=axillary web--check out the link, and see if it helps. Do consider getting a lymphedema evaluation, because some women will have pain before they have much swelling.

    Boy, Estepp, you sure started something--and it's great to be able to share and support each other. 


  • kittycat
    kittycat Member Posts: 1,155
    edited October 2010

    Sorry to hear about what you're going through!  That sucks!  Cancer sucks!!!  It all sucks!!!

    I hope it gets better soon!  :)  (((hugs))))

  • mrsnjband
    mrsnjband Member Posts: 64
    edited October 2010


    Swelling from LE is not always visible to the eye or measurement. My bc arm is actually smaller now that the non-bc arm.  But I did have swelling., I have been getting therapy and see alot of improvement.

    I'm having LE in bc side where the breat used to be.  Now today I am seeing more problems in other areas than before.  This really sucks. 

     I have had a lot of pain in the bc arm since the BLM.  My job makes the pain & LE worse. I am a music teacher & I need my job.  But it makes me really angry!!!!

    My therapist is awesome but this LE is a royal pain.  As I told her yesterday, bc is just the gift that keeps on giving.  It is no joke & I am not laughin.

    Venting. NJ

  • kcshreve
    kcshreve Member Posts: 349
    edited October 2010

    My LE was not determined by the arm size difference, since they were fairly similar after bilat surgery, but instead by the fact that there was pressure and discomfort which was amazingly relieved by my first session of MLD.  I've had various swelling since, but for me MLD does give me relief, although it's about 4 hours later that I notice it.  and that's only if I keep up with it faithfully, which I will admit I'm tired of being faithful.   :)

  • lmc1970
    lmc1970 Member Posts: 73
    edited October 2010

    Thank God I am not alone! I don't have the swelling but the pain is becoming unbearable! I've read websites that say there is no pain with LE-what the???? Oh and many thanks to my doctors for not explaining the possibility of truncal LE to me...sometimes the internet is more reliable than my doctors-especially the one that said that once the surgery is over we don't help with the arm pain. Gee, thanks so much! And having to take drugs every night so I can sleep is not my idea of leading a healthy lifestyle. Any suggestions on how to ease the pain would be greatly appreciated!

    I'm 40 and I want my arm back!!!!!!!!!!


  • kira
    kira Member Posts: 659
    edited October 2010

    Truncal lymphedema is very painful, and arm lymphedema can cause pain as well.

    Here's a link to information on truncal lymphedema

    I know I keep writing, ad nauseum, about how I went to the National Lymphedema Network Conference, but Jane and I attended the amazing Andrea Cheville's two hour lecture (she's a physician at Mayo clinic who is just brilliant, IMO) on Pain Control in Lymphedema. It's real.

    Another poster has found relief in gabapentin. There are a number of medical options: like low dose tricyclic antidepressants, gabapentin, cymbalta. And just getting good control of the swelling can help.

    How dare the doctor tell you that his/her job was done after the surgery: nice to be a time limited technician. 


  • Marple
    Marple Member Posts: 10,154
    edited October 2010

    I wonder if a Dr. has to actually get lymphedema to really 'get it'.

  • kira
    kira Member Posts: 659
    edited August 2013

    Sharon, either they have to get it, or a family member--just from what I observed at the NLN and personally.

    Full disclosure: I worked in medicine for over 20 years before my bc diagnosis, knew enough to be worried--it was the first question in my notes to the surgeon, but was absolutely CLUELESS about prevention, treatment and how it can literally turn your life upside down.

    I fired my breast surgeon,  and my rad onc because 1) the surgeon told me she had no responsibility to treat it, and 2) the rad onc told me that radiation never causes it. Fired my gyn because she told me that if I had asked her advice when I was diagnosed about which surgeon to go with (I'd called her 5 times and she told me she couldn't advise me) that I wouldn't have gotten LE. And I'd worked with these women professionally for many years, and had no idea of their limitations.

    Yes, I'm angry--still.

    I have all these resources and education, and I was clueless, and had no idea how to fiind good care, until Binney showed me the way, with infinite patience and kindness. And the other women on the board keep helping.

    Heard a lecture from Dr. Cormier, a surgical oncologist, who started off saying "I don't treat LE, I cause it." and she was very up front about how surgeons need to handle the tissues gently and she showed how much traction occurs in a SNB--she thinks she gets less LE in a full axillary dissection for melanoma, because she doesn't try and get the nodes through a tiny incision.

    So, I wouldn't wish this on anyone, but unless they have personal experience, they overwhelming ignore or deny LE. Therapeutic nihilism, as my textbook says.