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GRRRRRRRRR I HATE LE..........

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  • binney4
    binney4 Member Posts: 1,466
    edited October 2010
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    Brazos, wearing it inside out is not likely to cause you any problems, except that if the silicone band at the top was on the outside you may have had problems keeping it up where it belonged.Laughing

    KittyDog, I'm so sorry! Yuck! It never gets any easier to get over these insults to our bodies, does it? I'm with Brazos -- watch it for now, but be ready to holler for help if it doesn't gradually improve. Rest up, drink lots of water, stop every so often and do some deep breathing -- take good care of you!

    Binney

  • binney4
    binney4 Member Posts: 1,466
    edited October 2010
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    Jo, there are no words. Frown I just wish the rant would help, anyway. At least a little.<sigh!>

    Hugs, prayers,
    Binney

  • Firni
    Firni Member Posts: 521
    edited October 2010
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    Jo, that really sucks.  So far I've been lucky with any injuries to my left side.  I did cut my knuckle at work a few weeks ago.  I went to worker's comp and had it looked at.  The doc thought I was nuts.  Probably should have gone sooner and had a couple stitches.  But I waited about 36 hours, so no stitching for me.  Now, the worker's comp people have sent a hippa release to get my medical records to process my cut knuckle.  Really irritated me that they need my entire medical record, but as long as they pay the claim.  I have a high deductible insurance and didn't want to spend the money to go to my reg. doc.  

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010
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    (((((((JO)))))))

  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010
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    Hi, Jo:

    I am so sorry for all the troubles you've had.  I've had cellulitis one time since I developed LE in April of this year and I never want to do that again...ugh.

    Girl, I wear sleeveless stuff with kinesio tape (hot pink) striping my shoulder, my sleeves are all wild designs like tattoos, etc., and I don't care if someone thinks it looks strange.  I am just going with it, you know?  I do get a lot of questions...and alot of wierd looks...but I live in Mississippi.  In August, down here, there's no way in hades I'm wearing a long sleeve shirt.  Some days my arm looks really puffy and kind of Pillsbury doughboy-ish, and other days it looks okay.  I just can't worry about it.

    I've had construction guys ask me if 'that's a tattoo', and I just laugh and say no. 

    Honestly, I have not run into any other women save one who was wearing a sleeve.  I had one lady who was diagnosed with LE that I know, and she refuses to treat it, wear the garments, etc.  She would rather just pretend not to have it.  It makes me so sad to see women so afraid of this stuff.  I mean, it's a pain in the tailfeathers, but ignoring it will not make it better.

  • wherria
    wherria Member Posts: 194
    edited October 2010
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    Thanks for the replies, Firni and Binney.  Anybody else have swelling go down after chemo?

    And here's another question: does drinking lots of water help?

    And another: Does decadron make the swelling better, worse, or no effect?  I had Decadron with my chemo this last week, and I hadn't been taking it at all before that.  Could that have triggered more swelling?  My onc says the main reason they give Decadron is to fight off edema, but I realize that doesn't necessarily apply to LE.  I'd appreciate any feedback.

    Thanks.

    Whitney 

  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010
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    Wherria, I can't answer the other questions you ask, but drinking lots of water DEFINITELY helps me.

    I am sorry you're dealing with this...

    Suzanne

  • Marple
    Marple Member Posts: 10,154
    edited October 2010
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    I hope you get back there too Jo.........and soon.

  • vivvygirl
    vivvygirl Member Posts: 171
    edited October 2010
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    Hi All,

    Can everybody move down just a little so I can squeeze myself into this group? Is that okay?

    I have been reading all the post since last week when after painting the ceiling my hand decided to swell and hasn't returned back.  Have been to the doctor who has confirmed LE and now waiting to see LE Physio tomorrow.  I had slight swelling before when I overdid things but always went down usually within 24 hours.

    This whole episode has scared me again and has brought back the BC experience into focus again.  I feel like throwing myself on the floor like a 2 year old and scream and pound the floor shouting " I don't want this". My family now again have to go through me crying and feeling like I am a bit of a burden on them.  I actually had myself believing that I was "Superwoman" again and that I could do everything I used to and probably more. But I have listened to the advice you ladies have given on this boards and I thank you.  I am taking things slower, drinking water and pumping my fist in the air but as yet unable to give up my coffees but have made half of them decaff.

    Hugs to all

    Viv

  • Estel
    Estel Member Posts: 2,780
    edited November 2010
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    vivvygirl - grrrrr!  Yell  We all knew the 2 year-old temper tantrum feeling.  Don't have much to say but I'm sorry!  It's just so frustrating!  We want our lives back and as we try to step into them ... we can't!  It is one of the more frustrating things we have to deal with.

     You're doing the right thing.  Good for you for getting in to see the therapist.  Once things have settled down you very well might be able to do what you did before ... only with compression garments and at a slower pace.  Take care, viv. 

     so sorry!  Cry

  • Firni
    Firni Member Posts: 521
    edited November 2010
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    I don't think the Decadron ever did anything to ease any swelling for me.  Onc did put me on a Zpack of another type of steroid and that did take all my swelling away for a while.  Well, till my next chemo.  He wouldn't give me any more.  I drink caffeine and don't drink enough water.  So far, (knock on wood) I haven't noticed that I'm any worse.  It's gardening, if I forget and carry something heavy or do too much typing, I notice increased swelling.  Any time I do physical activity I don't normally do, I wear compression.  Well, my foot I always wear compression.  

    Viv, you go right ahead and have a tantrum.  You're entitled.  But put your sleeve on first. LOL 

  • Estepp
    Estepp Member Posts: 2,966
    edited November 2010
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    Awe Viv.... I, We know just how you feel..... so sorry....:(...

    Firni... I like your humor. Hidden... but right on the surface.  I dig it sister!

    I could not give up my 2-3 cups of coffee a day... but I am trying to drink some water every day.

    I still found, this week... that working it what set me to swelling in the arm and trunk.

  • brazos58
    brazos58 Member Posts: 109
    edited November 2010
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    (( Everyone))

    My question for today is how do you know you have truncal LE? 

     I bought new yard work/ house work gloves to wear over my glove/ sleeve..... I am def feeling a achy burning arm if I am using it with the extra work.

    And this is a new one .... started with the ABC Postop Camisole with FLUFF's....Bilat....it seems to bother my arm some. So I have taken at least 1/2 the fluff out of each form. That seemed to help. I am only wearing it for hugging sitchys and chest protection when needed.

    I am working on the water!

    Coffee..... hmmmm....not yet.

    Thanks for all your thoughts, ideas....

    Support and Light to Everyone

  • Tina337
    Tina337 Member Posts: 516
    edited November 2010
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    Yeah, definitely wean when it comes to caffeine!! I loved my coffee and drank 2-3 mugs a day. Went down slowly, about 1 mug less every week. Once I got down to drinking 1 mug a day and started to see I felt better, I was really motivated to take it a little further. I couldn't cope with drinking 1/2 mug of coffee - that seemed too much of a temptation and I'd end up drinking a whole mug. So, I switched to a whole mug of decaf but didn't notice any difference, and the flavor of decaf just didn't do it for me. Since I like tea, I switched to a mug of tea, and bingo! that took the swelling down further. I've wondered if there's something about coffee itself that aggravates the swelling. I've noticed that when I cheat and have an additional mug of tea, I don't have a problem. I can't bring myself to lose that one mug of tea a day, esp. in the winter. When I do cheat and have more caffeine, I drink more water to offset.

    It's hard to think of giving up certain things, but when you notice that the tradeoff is that you feel so much better, it often becomes a natural choice. And yet I do cheat now and again, as sometimes you just need to let yourself enjoy a treat. For example, I ate 6 Reeses peanut butter cups last night . . . well they were THERE!!!! 

  • Tina337
    Tina337 Member Posts: 516
    edited November 2010
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    Forgot to answer your question about truncal LE, Brazos. Does the extra fluff in your camisole make it fit more snugly? 

    My truncal LE first felt like a slight burning, tingling feeling right where the edge of my bra sat under my arm. Then I noticed it a little in the back near the band area, too. This feeling started to drive me nuts (little did I know just how batty and irritable LE can make you feel). About four months after that while traveling to Fla., I had a big flare and could feel a squooshy area under my arm where it had first felt tingly. It was actually visible. My last flare when I had pneumonia this August, I could feel some swelling toward the front next to my implant.

    My LE therapist said that truncal LE is much harder to measure than arm and hand LE. It is difficult to get a measuring tape to sit in exactly the same place each time when circling around a larger area, esp. if you have implants or breasts. And there seem to be more natural fluctuations in trunk measurements. So if your measurement is higher, is it your LE side that is swollen or is it just a difference in the unaffected part of the trunk? The answer for truncal LE is usually based on how it feels more than what the numbers say, esp. when there is no obvious swelling. If it feels swollen or heavy, burning, tingling, or just not normal, then that's more important than your measurement. Obviously, if you've had noticeable swelling and it looks less swollen and your numbers are down, you're probably gaining some control over the LE. For me, truncal LE can be painful as well as uncomfortable. When I have less pain and feel more comfortable, I know I'm doing well, and I don't care what my numbers say.

    Bras or tanks that produce that buzzy, burning, tingling or full feeling in a spot where they sit should be avoided unless you have an insert that protects the area. My truncal LE is pretty much stable, with little fluctuations here and there according to weather, diet, sleep, lifting things wrong, but all I have to do is put my favorite bra on and within 15 min. I will start swelling. Needless to say, that bra sits in my drawer . . . I guess I should throw the damn thing out.

  • KittyDog
    KittyDog Member Posts: 656
    edited November 2010
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    I think I have had truncal LE since my surgery and just never realize that the full feeling under the arm wasn't normal. I know now that it isn't normal thanks to my therapist that got rid of it for a short while.  I also get stinging in the MX area when I am swollen.  It actually feels awful today.  My not being able to do much of the MLD and wearing of the sleeve has taken it's toll.  I can't wait for my appointment on the 17th.  I am hoping she deems me healed enough to work some of it out.  I don't think my arm is swollen much.  It is all around the back of the shoulder then towards the front half.

    I don't drink coffee but I love my Mt. Dew.  Drinking one today.....oh it tastes so good.  I haven't had one in over a week.  I did good!  I do drink tea and I find tea makes me go to the bathroom more.

    Hope you are having a swell free week!!!

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited November 2010
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    don't have a lot to say, that you guys haven't said. i have found something new on hsn that's not for le: just the overweight women, like ME; its a camisole shaper. comes down longer than i've ever found in shapewear, and it starts compression under tha bra area. its made to wear your own bra under it; but i put my foobs in it, with velcro im finding it keeps the swelling on my sides truncal area less swollen, and i actually feel better for the compression. its' called" Diva Defined Slimming Cami..comes in ex small - 3x, and i love it. almost the material in my sleeves, but silkier, and less compression. it has def. helped. reasonably priced, also. im sick of big$ for compression stuff..it cost me $80.&( for two, including s&h.. maybe take a look on the site. also, returnable till jan. 30th., so you can try it, and return it if it doesn't work. but, you can wear it, and still gret your $ back.. HSN is my friend>>>another thing new with this is, it adjusts> unlike any shape wear i've found before. it has a hook and eye like a bra; but over your belly, with 4 adjustmts. they put them in facing out, so nothing sticks into you, and like i said, accomadates foobs, for those of us who wear them, you lucky ladies who have had recon just wear it w/boobs in as your bra..ck it out, and let me know if you like it as much as i do...   3jays
  • faithandfifty
    faithandfifty Member Posts: 4,424
    edited November 2010
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    Those of you around here for more than 6 months and a day, remember when I had my first melt-down over the beige color of sleeve/gauntlet that was delivered just before I was to fly out to DC.

    Kept it, no time for exchange, but cried.

    Ordered fuscia.

    My first re-order of sleeve/gauntlet, arrived yesterday before today's flight.

    Ordered fuscia.

    Got baby pink.

    Didn't even cry, figured what-the-hay.

    Opened the boxes this a.m.

    The new baby pink gauntlet is totally weird, the wrist doesn't even go more than an inch. Barely meets the sleeve -- let alone have any compression in that area.

    For Pete's sake.

    Thru security and just wanted to growl. End destination: Anaheim.

    So I'm wearing my new pink sleeve on compromised arm, with my tacky disgusting old gauntlet in beige, reverse for my non-compromised arm.

    I got over the crying bit a while back..... regarding "appearance" of these contraptions. Now I'd just like them to be functional.

    Twill be talking to Juzo about the wack-doodle gauntlet.

    xx00xx00xx00xx

    Everyone have the best day possible!!

  • Marple
    Marple Member Posts: 10,154
    edited November 2010
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    I wonder if some companies 'get' how important compression garments really are.  My fitter had to send my last sleeves back four times before it finally came back right.  

    And you're right Faith, colour isn't a big issue but geez, can they not even get THAT small pleasure correct?  Wouldn't that be swell? Wink

    I was remeasured and had a new sleeve ordered last week.  Sigh, let the games begin.

    Gentle hugs all. 

  • SleeveNinja
    SleeveNinja Member Posts: 13
    edited November 2010
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    Annoying isn't it:  all the emphasis on precise compression and construction;  astronomical prices for a small bit of cheezy fabric;  absurdly long waits for "custom" from Europe;  your choice of small/medium/large and beige/beiger/beigest  . . . .   All this, and it takes forever to get it right. And once you do, you're lucky if you find the same product to be the same product twice . . . .  I think most of these companies "get" that we are at their mercy.

    Grrrrrrrrrrrrrrrrrrrrrrrrrrr.
  • Suzybelle
    Suzybelle Member Posts: 102
    edited November 2010
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    Look, it is a big deal how it looks.  If we have to wear this crap, we should at least get to look cute, or at least interesting.  I mix up my gauntlets and sleeves all the time and don't match, but I like looking like a tattooed wacko.  Tongue out

    I have truncal LE on the right side, but it's mild and I refuse to wear the compression tanks.  I don't mind wrapping my arm at all, but I hate with a passion the way that the compression tank uh, compresses me.  Sorry.  There's no other way to express it.  I find as long as I'm doing MLD and my flexitouch machine the swelling is manageable, but there are times when I'm like the Pillsbury doughboy on that side and I have no fat up there - it's all on my butt.  Yell

  • Estepp
    Estepp Member Posts: 2,966
    edited November 2010
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    Ladies......  I am, unfortunately, one of the girls who cares how I look....:(.......... I am working on this part of myself.

    I suppose..at my age... I should not. No one is paying attention anyway... right?? LOL

    IS THERE A MACHINE I CAN BUY TO HELP ME WITH LE???????????? Did I miss something?

    I am like you Suzy............... I do not want to wear the stupid body suit. I have Truckle LE.. and so far... I still refuse to wear the stupid  upper body suit.

    I did buy a bra today... that is full back... like three freakin' inches in the band. hopefully this will help... I feel so gross in cloths... :(

    I thought......" Life begins at 40" or as the play goes..." Wife begins at 40".....

    Well........ I am still 10 pounds overweight.... and it SHOWS on a 5ft girls............ and my boobs only look sexy in a sexy bra that LE HATES....

    I hate to let BC win... but with LE.... it kind of does ladies.... it is just the way it is.

    Others can move on. We CANNOT.

    I wonder how many of " us" go on  DRUGS of whatever kind to allow us to deal with the rest of life. The life that is NOTHING like " normal" BC girls...... NOTHING.

    There is stage 4.......... then us.

    Hands down... stage 4 is worse... and WAY more painful.

    Then US.

  • binney4
    binney4 Member Posts: 1,466
    edited November 2010
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    Just wanted to suggest Gottfried sleeves and gloves, because I'm really happy with them as a company, and their product is excellent. They're QUICK with orders and flexible about adjustments. My fitter likes working with them because they're responsive and because they realize how hard it is for us to wait for our garments so they get them made and shipped promptly. They come in a lot of different colors. I like the black ones and get compliments on them. (Bizarre as that may sound!Undecided What do you say to someone who thinks you bought them at a boutique?!)

    I just tried out a new WearEase compression cami called a CrissCross Shaper that is actually sexy. It won't work well if your truncal swelling is smack in the middle of your chest because it's cut low there, but it's high in the axilla and around the back -- check it out!

    All is not lost, Laura.  Take heart!Smile Sure we have a constant reminder of our bc experience but -- honestly now -- were we likely to forget it anyway?
    Binney

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited November 2010
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    hey binney,wanted to jump in n say hello. im still here most days, not posting as much. got those new shapers, as much for my chemo bloat; secondary is that its great for the side "truncal" swelling ive had since "clean up dog ears" surgery.im cking your out tonite. the new one i have, is high cut. would love a lower cut, am still in many clothes i wore before b.c.       light and love,      3jays
  • Estepp
    Estepp Member Posts: 2,966
    edited November 2010
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    Yes

  • lmc1970
    lmc1970 Member Posts: 73
    edited November 2010
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    I'm with you estepp! I am over LE! I can barely move my arm and can't imagine how I am going to live like this! I am stage 4 and I have LE-hard to keep a smile on my face somedays!

    One positive for those of you who are in the US is that you have a lot of products to chose from. I just ordered some online and am praying that they work! Australia is a bit behind the times in LE products....

  • Estepp
    Estepp Member Posts: 2,966
    edited November 2010
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    1970...... stage 4 and LE....... sister.... you win....well.... nobobdy win in this. Yell

    I just wanted to post a (((hug))) to you. I am sorry you suffer so much.... It is just not right... and I wanted to tell you that I care.

  • Suzybelle
    Suzybelle Member Posts: 102
    edited November 2010
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    lmc1970, I am sending you a cyberhug as well.  That is so not fair that you have to deal with all LE AND stage IV.  I am sending good thoughts and prayers your way. 

    Laura, at the risk of sounding like a big goober (which happens to me a lot) I wanted to tell you that I wear a compression sleeve and gauntlet every day.  My arm is uncomfortable and painful if I don't.  I wear patterned sleeves/gauntlets.  I also had a bmx with no recon. 

    Here's the goober part of my speech:  When I first got LE it was two months after my surgery.  I was so self conscious about it.  I felt like a freakshow.  People stared at the compression garments.  I felt like people were checking out my flat chest.  I'm 5'8" and am pretty thin, so it's not 'that' noticeable, but I was just very self-conscious.

    Over the past several months, I have sort of come into my own.  I dress for me now.  I wear fun stuff that I like, and my first thought is not 'hiding' or camoflauging anything anymore.  And I think I look good.  I actually put more thought into clothes now, and have more fun with it.  I gave away the stuff that was built for cleavage and breasts and bought some things that look really good on me.

    I did get my hair straightened w/the Brazilian Blowout.  I knew you would appreciate this since you're a hair-stylist.  I have really thick, long hair, and washing, blowing, and then flat-ironing my hair 2-3 times a week was killing my poor LE arm.  So I decided to spend the money and it's so much easier to do now.

    I guess my point in this whole long, drawn out post is this:  I do what I like now.  I don't worry about what people think nearly as much as I did before bc/le.  If someone doesn't like how I look, or that I don't have boobs or that I have a wierd arm, I'm thrilled for them, but I don't really give a crap. 

    This has been a long, drawn out process to get to that point and it's been filled with brownies, tears, therapy (the mental kind.  ugh.) and lots of swearing (way more therapuetical than therapy sometimes) and if I am grateful for one thing out of all the misery this year, it's that I've realized how much time I spent worrying over other people's opinions and how the only opinion that really matters is mine.

    Okay...I'm done.  Thanks for listening!!!!  Kiss

  • wherria
    wherria Member Posts: 194
    edited November 2010
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    Suzzybelle: Not a goober speech at all.  Thank you.  I've only been dealing with LE for three or four months now, and it helped me to read what you wrote.  It's funny, I have never been self-conscious about my flat chest, haven't been self-conscious about my missing boob, but I have been about my arm and hand.  You helped.

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited November 2010
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    suzzybelle - well said!!

    it's funny but I am more self conscious of my arms WITHOUT the sleeves on...I like that the sleeve makes my arms look slimmer then they really are... I just wish the sleeves were not so damn expensive, I would love to have fun colors and patterns.