GRRRRRRRRR I HATE LE..........
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Oh girls what a great thread. I am the preventative MX that has truncal and bilateral arm LE. I hate it SOOOO much. I have 2 sleeves but nobody will fit me for a full vest with sleeves as I am hving my TE's changed in March or May 2011. Once a month I have a flare up, PMS??? stress kills it and me mentally. I have been lucky enough to have a physio come to my house almost every single day single my reconstruction on Nov 17, 2010. She has made me her pet prohect as she did not get the treatment she needed straight after her BC surgery and I am so greatful to her. I am considering only working 2 days a week to keep the stress down and that way I could a bit more swimming and exercise to help as I found that helped prior to recon. Is caffiene a problem though?? I drink diet cola about 6ooml per day. I will cut it out if it will help. I have gained 5 kgs since MX and am not happy but do know most is the fluid as my arms are 8cms bigger than prior to surgery. So once I have exchange surgery I will be knocking myself out to get weight off and get back to being fit and hopefully that will really help this horrid issue. I am now on Endep as the problems did not put me in a good spot mentally and I even considered that things would be better if I was not here. So now I have that under control and have learned to bandage things are better. We have to keep on keeping on but by god it is crap !!!! Good luck everyone .. Kell
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Klassy - So sorry you've having to deal with LE. It sucks. No getting around it. I've noticed that mine is worse during PMS. I asked that question further back and no one answered ... but for me, yes, it does get worse. Caffeine can make it worse as well. Some have completely cut it out and it makes a difference. You need to drink water, lots of water. Salt is something I have to stay away from. Be careful on the exercise, while exercise is beneficial, TOO much exercise can cause a flare. I have to be careful with exercises where I use my arms.
Hang in there! We're hear to listen, learn from and encourage one another.
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I hate that I cannot work my arms and upper body like I used to. I used to have the most amazing arms and shoulders and upper back.... This is one of the parts of LE that piss me off the most.
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this LE is crappola.. i'm in the middle of it, right now.. my son "helped"me out of his new Jeep..lifted under the armpit, hard, bracing his feet..YIKES!! my arms and under arms where the nodess were removed blew up like a balloon. i have the cross body arm contraption from gottfreid.. thank goodness! i hate it, but have already seen a difference..
between my MS my legs dont work right..iused to use my upper strength to drag myself around. now, its' drop and roll.. or i sit down, and "sqootch" my butt.. whats' next?OMG!! is that even possible??i have NOW officially freaked myself out!! 3jays
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3jays... hang in there sugar plum...... there just CANNOT be anymore crappola coming your way...nope nope nope.... you have hit your lifetime max!
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Yes Jo.
When I lift more than 3 pounds... WHILE doing the reps it takes to even HAVE good arms... my LE shows up.
I, like you, lift my two grandchildren. Ages 4 and 3 . I try to ALWAYS pick them up with the non LE side.... if I do use the LE arm..... I KNOW that I need to get my compression on. I do try to wear my compression garments on days I have the kids ( three days a week) and whenever I try to work out my arms....
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR right there with you sister!
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One of our grandkids has grown up so used to seeing my garments that at age six, when I peeled off my sleeve in front of him one day, he freaked: "I thought that was your skin!" You just never know what they're thinking.
Nobody in their right mind would give up holding their grandkids just for the sake of the stupid LE. But when you lift the grandkids, always use good body mechanics: both arms, not just the one, and keep your arms close in to your body. Helps if they're not writhing, so if they're in the middle of a frenzy, get down on their level to comfort and quiet them rather than trying to pick them up while they're thrashing. Keep your arms and shoulders loose, not tense, and use knees or whatever else to help lift them. We can fix this, yes, we can! (As Bob the Builder would say...)
3jays, you are an inspiration! No kidding, you have so much to deal with and you creatively keep right on, and it takes my breath away. Stop for a moment, reach your arm around as far as you comfortably can, and pat yourself on the back for all of us!
Klassy, you're so much more than "the preventative MX that has truncal and bilateral arm LE"
-- you're one smart lady doing everything you can to learn how best to move forward with your life. Brava for you!
Long road still ahead, but it gets better -- honest!Onward!
Binney0 -
I have a lot of truncal LE. It really stinks! I wear my sleeve every day faithfully, and I wear the compression vest at night. I hate it though. I also use a swell pad that wraps around my chest on one side to the middle of my back. I feel so un-attractive in that thing. Add to it the crazy chemo curled hair when I used to have straight shiny hair, and I can get really down about it!
My PT has me doing exercises to strengthen my arms, but she has started me out very slowly. After exercising two days ago, I got sharp pains in my LE arm where it joins onto the front of my chest. My cording isn't completely resolved either, so it could be related to that, but it can be miserable. I'm so thankful for all of the input I receive on this board and for all you wonderful ladies that take the time to keep us informed. Bless each and every one of you!
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Rocket, I posted on another thread about how, lately, I wake up in the morning, and the first thought that crosses my mind, as I contemplate dealing with my wrapped arm and the hand rehab exercises I have to do for my broken, LE hand--is that "I HATE LE"--I'm sick of it, but surely not done with it.
When I broke my hand, I knew I would have to deal with the consequences, and there have been plenty: nasty employers, rehabbing the hand and worsened LE in the hand. For me, there's this horrible feeling when I can see that my hand has taken a step backwards, and I lose all perspective. (Like--I broke it, it takes time, it's not the end of the world, why does this loom so large in my life????)
The OT has started to strengthen my hand, and although she's LE trained--I don't think she "gets it"--she wants me to do 40 reps with the 1 lb weight--and with 10, I already have my tennis elbow back, and my hand took a beating.
I know we need to get strong, but we're all different and need to respect our LE or deal with the consequences.
Very grumpy here, sorry.
Kira
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Kira - GRRRRRRRR! You've been through so much. One of the things I'm realizing with this stupid LE is that we're all different. Just as individuals we're all different, with our personalities, our physical characteristics, this d@*%$# LE is individualistic too. What works for one, doesn't necessarily work for another. What causes a flare in one, is no big deal with someone else. That's one of the things that so frustrates me about this condition. It's not simple, it's not one size fits all 'get better' program. It's so individual.
You've come so far! Hang in there, girl! We're rooting for you and we're with you!
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Oh Kira I'm so sorry you are having to deal with all of this. It really sucks doesn't it? When I'm down about it, I hate explaining it to people who are curious. I detest wearing the compression garments. I know they help, but once in a while I just would love to feel like my "Old Normal". My right arm feels very weak and it's my dominant arm. I go to PT on Friday and hopefully that will help some. The pain in my underarm area can get pretty intense and I think it's the cording. I've been dealing with that for two months now. Some cords have broken, but others are incredibly stubborn and the treatment is very painful.
On a positive note, my husband is giving me a puppy. We drive from NC to VA this weekend to see him and then in two weeks we can bring him home. I'm going to call him Baxter. He's a black mini goldendoodle. I just hope my LE doesn't flare up when I pick him up. I'll follow Binney's instruction and use both hands.
Hang in there Kira! You are truly an encouragement to us all and it's okay to be grumpy. LE is definitely not for sissies, and we are some tough women!
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Dawn and Rocket,
Thanks so much--this sure isn't for sissies.
A puppy, how wonderful! My sweet dog--my avatar--is half aussie/half shepherd--and she sure is a comfort when I'm grumpy like this. My dh helps, but this is a marathon, not a sprint, and we all "time out"--and he just wants me not to be upset, and I AM upset.
Thank you--it's rough lately--and I appreciate it sooo much.
Kira
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Rocket, congrats! I can't think of anything much cheerier than a Goldendoodle puppy, and the miniatures are especially adorable -- they look like muppets! (We have two nutty Goldendoodles, but they're NOT miniature, and they're...well...golden.) Baxter will bring you both some much-needed cuddles and laughter. We'd love a picture when you get back from VA.
Any chance?Kira, you've really been through the wringer with your hand -- "grumpy" sounds like a perfectly reasonable state to be in about now. Get well quick! (And meanwhile hold the line with your insane work situation.)
Be well,
Binney0 -
New puppy sounds like fun but I'm past being able to cope with a large breed puppy. We just got a 5 year old Lab. She is fitting in beautifully with so little effort on our part.
I'm having a growth thingy taken off the bridge of my nose next week and all I can think of is........will this cause an infection that will hurt my arm? My nose could drop off (hehehehe, it's too big anyway) but all I worry about is my arm.
Gentle hugs to all you LE haters.
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Okay, so I go to the YMCA near work to meet with the Livestrong coordinator , and it turns out that she told the women in her "Starting Over" class--for bc survivors, which she is also-- all about me--we'd just spoken on the phone, and a couple of them are my patients and now they know I about my bc and LE.
Is this woman a complete idiot? Why would she violate my privacy?
I make a point of never sharing with patients--as it's THEIR visit, and there are all sorts of studies that show that self-revelation by health care providers is not comforting or enjoyable for patients.
So, I'm walking around with her, in my compression wear, and run into another patient--this is just a rotten day/week/several months.
The good news is, they have a salt water pool--I'll swim with a bag over my head.....And other parts of my body.....
Sharon: just have your antibiotic prescription filled.
I HATE LE, and I hate how it exposes us publically.
Enough of a rant.
Kira
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Hi Girls....I guess I am new to this club, as I was just diagnosed with LE. It sucks, and I can't believe I have to wear that stupid ugly compression sleeve and gauntlet for the rest of my life. My arm hurts, my fingers ache, my hand is swollen, and I have to put stupid bandages on every night. I used to have pretty hands, I could wear nice rings. I (like a lot of you) used to work out. I was athletic. I was FINE until cancer robbed me of my health last year. I had NO health issues, was on NO MEDS. Now I'm a mess--neuropathy, joint pain, chemopause, hot flashes--and the worst one of all--lymphedema. I can't even explain what it is to most people. When they see my bandages or glove, I just tell them that I've had some minor surgery, altho I've been tempted to say that I had plastic surgery due to a shark bite while surfing or something equally idiotic. And nobody can understand how awful this is. When I lost my hair due to chemo, I KNEW that my hair would come back. But this won't ever get any better and will probably get worse as I get older. What happens if I can't work anymore? Yes I hate LE also and its not fair that we have to go thru THIS after all else we've been thru. Breast cancer--the gift that keeps on giving.
Thanks for letting me rant, girls!
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What have those with truncal LE been doing for drainage? I had axillary node dissection and radiation to the armpit on the side that is swelling, and has been for the last year. I don't have a compression bra yet due to insurance - have to wait another month or two. Sleeping is difficult because I can feel all the fullness and when I wake up, it tends to hurt. No amount of stretching or MLD, use of the sleeve in the day or light wrapping at night seems to do anything. To top it off it is in such a difficult area for my other arm to reach that it does get overwhelming. My LE therapist thinks that scar tissue is a major factor in not being able to drain properly. Any suggestions would be greatly appreciated.
~ Leslie
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Gosh Kira!
You really have had a rough time lately. I can't believe that someone would violate your privacy like that. Does she not understand what she did? Sounds like you need to head over to Suzy's for a good batch of brownies under the bed. Hope the sun starts shining on you SOON. Enough crappola!
Deb
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Leslie, here's a page about truncal lymphedema. At the bottom are links to all kinds truncal compression solutions, from cheap to only-with-insurance!
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmEven an UnderArmour-type sports shirt can help, and their website has several styles on sale right now. You might want to buy it a size smaller than you'd normally wear, and turn it inside out so the seams don't irritate your skin.
For truncal areas that are hard to reach some of us use a (new, clean!) paint roller. Not ideal, but it works.
Lindee, there just aren't words for a new LE diagnosis. I'm so sorry, about the swelling, the foreverness, the stupid sleeves, the loss of rings on your beautiful hands -- and the saddening questions people ask (my favorite quick answer is, "Trapeze accident.") Stick close and we can at least cheer you onward!
Hugs,
BinneyP.S -- Sister in Spirit, what a beautiful avatar -- who's the gorgeous kitty?
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I had my bone density test today and they are done at the women's center where they do mostly mammograms. The receptionist asked me how did I break my arm. I polietly said I didn't I have LE. She quickly hushed up. That bothers me more than the old man at the fireworks stand who politely asked me if I would explain to him what it was and if I didn't want to he understood. ugg still hate having LE.
So my question tonight is if you have a pump, do you like it and if so or not which one do you have? My therapist mentioned seeing if they could get my insurance to cover one.
I also get measured again Friday and she is hinting at what I thought I needed to start with a custom sleeve. lol I tried on my sleeve for her and she said this thing isn't long enough. I nicely told her that it is the long length. She said you need an extra long then. I nicely told her they don't make it in an extra long. Gee I have been telling you that it didn't fit right but we like them to fit tight. ugg do your homework.
(((((HUGS KIRA)))))
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Oh girls.... so many posts today..... so many painful stories with LE! I am very sorry for each of you!
(((((((((((((((((((((((((( GROUP HUG )))))))))))))))))))))))))))))))))
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thanks, Binney, for the profs.. you were SO there for me, in the begginning..you, also Kira; im so sorry you're having a go of it. this too shall pass: they just never say WHEN!! so, rocket, tell me: how can he(she) be a BLACK GOLDEN doodle.. isn't that a misnomer..
seriously, though, i could not face life wiythout my 5lb boy at my side. he's a liver colored chiuhua, and his black and white blind sister beside him.. both fully registered service dogs. they go everywhere with us. got me thru my worst days, so far.. i'm so glad for your new puppy. want pix when you get em!!! 3jays
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I wear a sports compression shirt in a no sleeve mens medium. It is tight enough to give me relief from the truncal LE and it does not hinder my horrid sleeves that still dont fit properly and i rip them off half way to work because they do more harm than good !!! I just pruchased a long sleeve skins compression top and had the seamstress cut the sleeves to 3/4. I will be swimming in this. I have to make sure I am fully dry and put some baby powder on me to get into it. Also I had her put a zipper in the front as I have such reduced movement with my cording, Although another hideous painful session tomorrow night and i reckon ill have them cords under control. Please god please please do not let me have another flare up when I get my TE's changed in March for my forever girls... I am begging... or leave the drains in me forever because when I had the TE's put in in Nov 17, 2010 that was the best week ever with LE.. no dramas at all. Mind you the ding bats in surgery ignored my hot pink LE bands and put blood pressure cuffs on both arms while I was under. Smashed my arms to pieces and I woke up black and blue. When i asked the surgeon who did it he just said make sure you follow up and make a complaint it was a silly mistake... yeh for who I say...This time ill have them stuffed as my hubby is writing on my arms with permanent marker, "Touch these arms and you will be killed"... that oughta be enough to warn them i reckon !! I am still hating LE... but coping better today.. I love the strength of this community..x Kell
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I wear a compression vest and some additional padding that my PT ordered for me which I put inside. It covers most of my swollen areas and I do notice improvement in the morning - except for this morning. I began exercises this past week that my PT instructed, and after doing them last night, I woke very swollen this morning. I emailed her and she told me to stop exercising until I see her tomorrow. She will also treat me for the cording again. It's ridiculously painful and is taking forever to resolve. I've been treated for 2 months now for it. Some cords have broken, but others are so stubborn! It's very discouraging!
As for the goldendoodle, they come in a variety of colors because of the poodle. A goldendoodle is a pairing of a golden retriever and a poodle. The poodle genes have many colors including chocolate, black, and gray as well as buff and cream. Hence, all goldendoodles are not golden. Mine will be an F1B generation goldendoodle which is a goldendoodle paired with a miniature poodle so it will have more poodle than golden in it. I'll hopefully get pictures this weekend. :-)
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My avatar is sweet little Alice. Got her from the shelter about 3 years ago. At times when I think I am not using a light enough touch when doing MLD, I pet her a few times and get back on track.
Rocket, can't wait to see your goldendoodle!
Sis
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I saw my OT this morning--and I was prepared for her not to understand that the strengthening exercises are worsening my LE--and she totally got it!
She told me to go slower and back off if there's more swelling and tennis elbow pain. And to be sure and wear compression with the weights and for an hour afterward--at least.
And, about the Livestrong moron--who broadcasted my personal stuff to the world, I figure if someone is that clueless, there's no point in confronting her--but I sure will avoid her.
Thanks for all the support yesterday--just a rotten day, and I agree with 3JaysMom: I need to know WHEN this will pass....
Kira
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Okay ladies, here is mr GRRRRRR for the day. For about the past month my good hand that I use to do the MLD is getting sorer. The pain is in the knuckle at the base of my index finger. So far I've tried Voltaren gel, wrapping with coflex (annoying) and trying to adjust my massage technique. All has helped some, but the pain persists. Appreciate any ideas you may have.
Sis
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sorry, no ideas. just lots of empath, and trying for encouragement.. this is such a crapshoot! we just keep trying, and trying, till we find something that works..{{{{sisterinsp}}} your kitty is adoravle!! 3jays0
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GRRRRRRRRRRRRRRRRRRRRRR
Haven't posted in the LE world for a while, tho I try to read whenever possible.
Yesterday I went to my first/FL BEGINNERS Zumba class. I have taken aerobics classes off and on thru my adult life, like since college.
Anyhow. We now live in an 'active-retirement-community' and basically I think it's safe to say that I was 10 to 15 years younger than every person in yesterday's class. There was a HUGE turn out. Like probably close to 150 people.
I was not comparing myself to anyone there. I LOVE to dance. The steps and pacing were very 'easy' for me, but all of the arm movements (which would have been the easy part for everyone else in the room) came as a crushing reality.
I adjusted everything. I paced myself. I drank a ton of water. I was soooooo discouraged.
GRRRRRRRRRRRRRRRRRRRRRRR
All thru the class I just kept talking to myself.
You are grieving. Give yourself some credit for showing up. You don't have to conquer this in the first class. Baby steps.
GRRRRRRRRRRRRRRRRRRRRRRRR
Even with the limited 'extra' use of my arms yesterday my chest area was so unhappy. My brain was so excited to participate and then my heart just sank so quickly.
I know that others face so much more. I know others here would give their eye-teeth to trade their LE particulars for mine, I know that I'm in the shallow end of the LE pool, but none the less, it stinks!!!!!!!!!!!!!!!!!!!!!!! It just stinks and stinks some more.
I will go back to my Zumba-for-beginners, intended for the aged, and continue to adapt it to what I am able to do, but it stinks. Yesterday the weather was perfect. I just kept realizing that I would not have been able to partipate on a humid sticky day, at all.
every onward.
welcome newbies.
hurl some glass into your recycle bin,
scream in the car,
buy yourself a bouquet, or
ALL OF THE ABOVE
but know that you are not alone.
xx00xx00xx00xx
Strength and courage.
Strength and courage.
Strength and courage.
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Ah, Faith! Bummer on the LE limits to the Zumba spontaneity!
But hey! It doesn't matter which end of the LE pool you're in, it only matters that we're all in it together -- you can drown just as quick in the shallow end as the deep. That's why we're all here playing "lifeguard" for one another.
Go back and ZUMBA!
We've got your back!
Binney0
