Topic: GRRRRRRRRR I HATE LE..........

Oct 14, 2010 11:38PM Sido wrote:

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.

 Sido

Oct 15, 2010 07:57AM Suzybelle wrote:

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!!!!!

Oct 15, 2010 08:43AM kira wrote:

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.

Kira

Oct 15, 2010 10:40AM annadou wrote:

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???..am 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

Anna

Oct 15, 2010 10:50AM Marple wrote:

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!

Oct 15, 2010 12:23PM kira wrote:

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.

Kira

Oct 15, 2010 01:23PM moogie wrote:

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!!!!

Moogie

Oct 15, 2010 01:59PM Suzybelle wrote:

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 out...is 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. 

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 up...my sweet husband bought me two today.  LE sucks but I am so blessed to have him.

Oct 15, 2010 03:10PM - edited Aug 20, 2013 05:56AM by kira

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.

Kira

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.

Oct 15, 2010 05:13PM Marple wrote:

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. 

Oct 15, 2010 07:26PM toomuch wrote:

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!

Oct 15, 2010 09:34PM - edited Aug 20, 2013 05:56AM by kira

Michele:

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.

Toomuch:

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:

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

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.

www.stepup-speakout.org/Cordin...

www.stepup-speakout.org/Findin...

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

Kira

Oct 15, 2010 09:43PM mrsnjband wrote:

Laura,

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

Oct 16, 2010 08:16AM lmc1970 wrote:

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!!!!!!!!!!

Lisa

Oct 16, 2010 08:38AM Marple wrote:

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