GRRRRRRRRR I HATE LE..........
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Moaning...
After doing alot of laundry and dish's that piled up while I was gone for 3 days in my FRAT HOUSE...that was Sunday.
Monday I spent 2+ hours getting the house ready for the Exterminator......that was clearing out the kitchen and quick sweeps of the perimeters of 6 rooms
MY right arm had been achy.... burning, and am feeling full in my armpits sun and mon. 1/2cm fuller in my upper arm than the day before.
So I come here to tell you Ladies that I put on my Jobst LE/ Sleeve and gauntlet for the first time... EVER. Yesterday afternoon that was. My arm stopped aching..... the fire went out.
Later I cried....so I think I christened it with tears. So I own it now.
Then I thought oh Crap.... i am gonna need more than one!
Questions for you when you get time:
Do you wash the jobst sleeves after each wearing? And what soaps are ok to hand wash them in I assume?
Hope you are all hangin in.
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Suzy,
You are NOT a buzz-killer! You help the rest of us realize that LE is honestly one of the worst things people have to live with, but that people live with it. The honesty and generosity and kindness of most of the post-ers here keeps me from being absolutely terrified that my LE will get worse. I know that I will have some horrible days, that I cannot expect good support from people I used to think would understand, and that total strangers will behave abominably, but that I can survive that, because you brave people survive it, in addition to the pain and loss LE causes all by itself. I came here three years ago, and I read almost every post and try to know as much as I can, because no one else took my concerns seriously until I talked to the hand surgeon last summer who will most likely operate on both my hands next year (6 months apart). Finally, 4 years after my bilat mast surgery, a doctor said he wouldn't touch my hands until I had been taught MLD and exercises necessary to help me get through the surgery and recovery. And now that I have a Vodder-trained LE therapist, I learn that I have Stage 0 LE, that all the precautions you all taught me about were just what I needed, and that I would have been in terrible shape if not for all you wonderful, generous, honest women! LE is what I'm afraid of, not you! You have given me hope, over and over again! That doesn't put a positive spin on LE, but it certainly does put a positive spin on you and the way you handle it, brownies under the bed and all! Thank you!
Dawn
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Suzy, yes, I know which post you're talking about -- her mom suffered horribly with LE when she was just a child, and there was no treatment at all for her. No therapy, no well-engineered garments, no understanding of what affected it or what to do about it, and you can bet she felt (and was!) incredibly alone. It breaks my heart just to think about it, so I can sure understand how fearful she must be.
On the other hand, bc itself used to be a taboo subject, and women who had it were ostracized and their struggles never mentioned or acknowledged -- hard to imagine as we sit here in the pink avalanche of October!
It was women just like us who made the world sit up and take notice about bc, and we can do the same for LE. 
Brazos, there's a thread near the top about washing garments. Most use a garment bag and a gentle cycle on the washer, some use their usual laundry soap others use Palmolive or something soft like Dreft or Ivory Snow. Rinse well. If you hand wash, don't wring them out. Just lay them on a bath towel, fold it over them, and press the water out. And yes, wash after every wearing (helps to have two sets). SOOOO glad they're feeling so good and helping! Wonderful! Keep us posted,
Binney0 -
Laura, I have truncal LE under my armpit, around on my back, and at times near the outside edge of my implant. No bras work for me. Last summer when I was wearing compression 24/7, my LE therapist suggested I switch to a tank, which I did. I had a hard time finding one that was wide enough in the back, and most had an edge somewhere that would lie on one of my hot spots. The LE therapist got me round 'swell spots' that I put under the tank below my armpit and a little to the back, which prevented the edge of the tank from pressing and provided a little extra compression there. I found the "Maidenform Control It" tank has some shirring in the front and allows a little space for implants. Not ideal, but it was the one that worked best for me, and it gets a good review. You can often find these on sale at Kohl's and Boscov's. Nice you can try on and not have to order. I am a small person, but I wear a size large. I also have an x-large one to wear at night with two large firm foam inserts. The negative of this garment is that after a while the pressure on my implants made me nuts. Oh, if someone would only invent a compression tank that has more space for implants or reasonably sized stretchy cups! (that fits me)
There was a discussion about compression tanks vs. bras a while back, and some ladies seem to do better with them. The point is that there's no band under the breast area to restrict lymphatic flow. Here's a link on the Step Up-Speak Out site that shows some of the camisoles that have been reviewed. You can see the "Maidenform Control It" there. Sometimes finding the right garment is half the battle!!
http://www.stepup-speakout.org/Compression_camisoles_lymphedema.htm
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Tina, thank you very much. I am looking into this. THANK YOU!
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Suzy....... you are a Buzz Kill........ WE ALL ARE... and I thank you for being candid and dumping your.....sh$% on us here.... it is what we have..... right? I am a Buzz Kill at home ALL THE TIME.... I only have lived with men ( and mine are the type to help and cure all).. so as they ALL cannot heal me.... they do NOT know what to do... well... I just tell them... most days.. that I am doing good. I do not believe that they believe me... but it keeps them out of my..."space" ..
it is tough when a man cannot cure you... they do not know how to deal with that.. at least my men.
Good for you Suzy for being a BUZZ KILL......
I,personally, validate this... Sweet Binny.......... I beg to differ. I SO WANT YOU TO BE RIGHT... but... I am SUCH a person who has a wall up and I DO NOT believe we will get anyone to fight for LE treatment the way we as women got " their" attention about BC. Call me pessimistic... I am actually.. a realist on these matters. I will , however, be PRAYING that you are right. I SO SO SO want to be wrong.
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I bet if we sexed up LE we would at least get 'awareness'...we would also need to figure out how companies can slap a blue ribbon on their products to promote sales.
Wow. I sound so bitter!!!!!
I did write my congressman and Senator about LE and how it's overlooked...I never heard back from them.
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I talked to my LE/PT about my concerns of continued monitoring and MLED as I am just about done my post op course at the hospital I had surgery at. She asked me why I was " STRESSING OVER IT"..... I told her I was educating myself as A RN! I am told I have all I need to monitor my Stage 0.....LE. And to ask my Surgeon for a PT/LE re-eval every six months.
My Surgeon totally dismiss's that I have LE at all. Or that I even had AWS.
It is amazing how downplayed LE is in the Medical / Surgical arena's.
So my next adventure is finding a LANA/ LE Therapist in my area....
(( NO SWELL VIBES FOR EVERYONE ))
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Laura, most of us after a while discover certain things that are triggers for their LE. Your mentioning of drinking more water reminded me of one of mine. I am not overweight, so I figured I had that part of LE covered. I'm a fairly healthy eater, too. However, I could never figure out why I would suddenly swell and have those stringing, burning feelings. One night, I ate an antipasto salad before dinner - it was left over from a special dinner we had with friends. I had made it myself - got special olives from the olive bar at the supermarket, as well as other toppings such as pickled hot peppers, mozzarella cheese, pepperoni, and then made my own dressing using a balsamic vinegar. Well, I hadn't even started dinner and I was suddenly in absolute misery! So I started thinking, why am I suddenly having this attack? Uh, can you say SALT? Almost every topping in that salad contained quite a bit of salt. After that, I started experimenting with what I ate, and sure enough, salt is a big culprit for me. So, unless I'm eating out, I really try to minimize the amount of salt in my food at home. And there are simple ways to minimize salt if you're buying prepared foods - try low sodium versions or just checking labels for the best choice. Oh, and soda (can you say sodium?) I pretty much avoid that unless it's a special treat.
Another culprit I discovered not long after the salt thing is fermented beverages. Yeah, wine and beer had to go. And, you can add vinegars and soy sauce to that since they are fermented, too. For making salad dressings, I just switched to using lemon or lime instead of vinegar.
The only other thing I notice that sometimes aggravates my LE is spicey food. However, since the spicey food I eat occasionally is takeout stuff like Indian, Chinese, Mexican, etc, it's hard to tell whether it's the heat or salt content.
Oh, crap, I forgot one last thing - caffeine. I switched from coffee to tea, and that's made a difference as well.
Anyway, I was sad to see my favorite foods go - esp. wine - but the tradeoff of feeling so much better has been worth it. Now when I'm offered a glass of wine, I joke with my friends that I've taken to hitting the hard stuff. I've found a mixed drink does no harm as long as I drink plenty of water to prevent dehydration. So here we are back at WATER again. I will insert here that when I do break my own general guidelines for lower salt intake, I make sure to drink extra water with my meal and after, and it does seem to help minimize its effect.
Sorry this is so long-winded, but my point is that when LE is out of control and we don't know why - even when we're doing all the right stuff - it's helpful to be mindful of what might be additional triggers.
I think it was on this thread, but someone mentioned that lack of sleep is a trigger for them. I will absolutely second that. That's part of why I have given in to taking valium at night or ambien so I not only function better during the day, but my LE is more stable, too.
Talk about being a party pooper - without even complaining, I've been a downer!! All this talk about denial . . . Well this is a different kind of denial, the kind that can be helpful!
I so hope you are feeling better soon, Laura. I really know your frustration and misery!!
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WOW........ If having LE means I have to give up all that you have... I do not see the point of living in my world...
Almost everything ( minus salt) you mentioned above... is what makes my life happy. If i took all that away.... I would not be happy... thus.... NOT living a quality life...:( I LOVE all the above.. I eat spicy/Tabasco all day.... I like wine and beer somedays...and on and on... I do not do sodas... but I love my coffee.
If these are my triggers.... I am in trouble.
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Laura, triggers are somewhat personal. Wine and spicy foods don't bother me at all, but salt does. Some people are not affected by salt either. DO experiment (with only one variable at a time) and see if elimintating one of those helps -- that's the only way you can make an informed decision about what you are or are not willing to give up. Not real likely you'd have to give them all up, even if you were willing to, but it does help to know when/what you're doing to yourself with each of those. If you discovered, for instance, that wine made things worse for you, then you could choose when to avoid it and when to throw all caution to the winds and enjoy it, knowing you might pay for it later. This is not about living an impossibly sad existence, it's about taking back control of your life, and you can't do that unless you understand exactly what you're really up against. There are no "rules," only guidelines that you wield any way you choose to, because you understand your own limits.
Hugs,
Binney0 -
Thank you for being frank Binney, It totally stinks... but what you say is right on.
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Tina337 - I appreciate your post, yours too Binney! Salt is a trigger for me too. I had capers with my fish one night AND a glass of wine and it was the worst flare I ever had. It is what convinced me that I actually had a problem and it got my butt moving to see a therapist. I've noticed since then that salt is a biggie for me ... any kind of processed meat, forget it.
The sleep thing is interesting ... I think that may be an issue for me. On nights that I don't get enough, my pain and swelling is worse. Why is that? Is it a depressed immune system?
I so appreciate all of you and your wisdom. I'm learning a lot and it is horrible that any of us have to deal with it, but I am thankful for the wisdom, experiences and insight expressed on these boards. I don't know what I would do without all of you. Thank you!!
xoxo
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Hi girls!
Question:
how long do you have to keep all your wrappings on for it to give some help. After being out all day with a 3yr old.. and lifting her...etc... I thought I better wrap my arm because I am going to be going into 10 hour days at work starting tomorrow. Well my arm has been wrapped for 5 hours. If I take it off before bed now, did those 5 hours help me at all?
I thought one of our great LE educators here said under 8 hours is worthless.. BUT... I might have read it wrong. I HATE WEARING this to bed like my LE therapist wanted me to do. Before I take it off though.. I hope one of you are up still, and can tell me what is best.
You ladies help so much. This is all so sad. BC is the worst.. but having a daily reminder for the rest of our lives.......... too hard to fathom yet...
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Weight gain/weight variability - to comment from a page or two back - my weight fluctuates a good 4 pounds from one day to the next. It was never this variable prior to LE. I just assume this difference is water retention, especially since I get the lower numbers when I've watched my salt intake, and the higher ones when I've ignored and eaten whatever I want. I am noticeably more uncomfortable at the higher weight, even thought it's just a few pounds. That's why assume it's water, and it's probably mostly hanging around in my arm and my back.
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Laura, when you wrap, it continues to reduce swelling best for about eight hours, so if you wanted to be really gung-ho about this you'd re-wrap every eight hours. I've never wanted to be quite that gung-ho so when I have to wrap I leave it for 23 hours, take a shower and re-wrap.
Tell you what -- if you can't face sleeping wrapped, then five hours is better than none, right?
And on the other hand, if you leave the stupid thing on all night you get several blissful hours of being more-or-less unaware of it, and you wake up at your best, LE-wise.So quick answer, better to leave it on, but we all do what we have to do to cope with this. No guilt, y'hear?
Sleep well, whatever you decide, and I'm wishing you an easy day tomorrow. (Stop whenever you can and DRINK WATER, take some deep breaths, and raise your arm above your head and slowly open and close your fist. It'll help -- honest!)
Binney0 -
Thanks Binney. I do the opening and closing all day at work... I AM going to keep the water at my station.. and the breathing I will do.. I used to be able to do Yoga, so I understand the breathing.
I only hate sleeping in the wrap because it hurts. Maybe I should wrap light for bed. Wil this even do any good? I tend to wrap MUCH lighter than my PT anyway. When she does it... my fingers throb.
I love the idea of having the wrap on 8 hours while I sleep.. but it just is too tight for sleeping.. and I wake, with my arm under my pillow and it has fallen asleep. ??? I start out elevating it... and it ends up under the old pillow and numb. I think I cut off my own blood supply.
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Laura!!
Well, now you know the extent of my grief!!! 
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Estepp~Your pain sounds so much like mine. This is what works for me. I sleep in an Under Armour Compression top when I have a flare. Also, my LE PT recommended Sassy Backs, but they are super pricey. So I found a knock off brand at TJ Maxx called Heavenly Shapewear. Their compression tank has soft areas for the breasts, but lots of support under the arm and on the back. My chest area swells too, so I like the Under Armour top at night.
Oh, and I am not giving up caffiene, wine, dark chocolate or spicy foods. Forget it. I'll watch my sodium intake. But I'm a totally foodie. We can do it all in moderation (except the caffiene...I won't make it a day without it). It's about finding a balance.
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i, also am glad ou ladies are here growling about LE.. mines more under control, but its' ecause the ladies HERE gave me the BEST informationmn i could get; i recognized it early, and im constantly vigalant with mld, wrapping and garments. my poor hands have the burning of a thousand suns (thank you!) as well. complicate it with the neuropathy i got in my hands, and having to use either a cane, or walker. i've had to resort to the wheelchair more ; just to not put soo much weight on my hands.. i have MS on top of the whole mess!! i, too, have gripes about my breast surgeon, but found a good LE therapist in the beginning. it'll get better now that the heat of summer is going.. but, in fla. it's most of the year. this summer was the worstfor my LE, and i'm glad its over. stretching, and stretching, and stretching has helped a whole lot. i'm just so thankful for you ladies ( and you know who you are ) who helped me in the beginning, when i was saying, and doing crazy stuff, trying to help it. good to see we're not alone in things, 'cause together we can deal.... light and love 3jaysmom0
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((( TINA))))
Trisha... good to know.. Sassy Backs... EBAY girl... go gettem'... WAY CHEAPER. My girlfriend gets all her bras there now. She only likes the high end bras.. so.. she gets her size ( Nordy's) and then gets home and goes to ebay... she gets ALL her high end bra's from $10-30.00 .... i sooooooooooooooooooooooooooooooooo want to wear an underwire push up bra again... now that I have great boobs...lol........... but I have been told by my " therapist" that I should not wear these.... But I tell you what... I think I AM GOING TO GO BUY a hot push up soon... and only wear it when the event requires it ( dh and I love dancing)
Girls... I pray your swelling leaves you this weekend.. so you can have a great " trick or treat"... we are going to be with our Grandkids.... we love this..:).. they both will love Halloween this yr as they are older... 4 and 3...:)
I drank about a half gallon of water today... did deep breathing...and did not forget to wear my compression garment to work all day ( 10 hours)... and I only had 7 people ask me.." what is wrong with your arm" So... if I work 4 days a week.... that is only 28 people a week I have to explain this too.....
This is better than the 15 people a day that used to ask... man.... that was rough.
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Hi, Laura:
It sounds like you are wrapping your compression garments too tight if they are hurting you - they shouldn't hurt. I have a tendency to do this as well - I have to really watch it.I have gotten used to sleeping in mine - it's no big deal now. I pretty much sleep in them every night.
Have a great Halloweenie!!!!
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Hello Ladies. I hope you all are doing well.
I have a question that I'd really appreciate some feedback on. When you were going through chemo, did any of you see your LE get worse because of it? And if so, did it improve any once chemo was done? I just had Tx #5 on Wed., and am more swollen than ever. Got a new glove and ordered night garment and vest on Tues. I got the glove that day, but the night garment and vest won't be in for about a week. But I wore the sleeve and glove (gauntlet actually) during my chemo Wed., and for the rest of the day, but when I got home and took them off, my arm wasn't too bad, but my hand was very swollen. I called my fitter yesterday, and she wants me to come in today so she can figure out if I need a larger sleeve or a smaller gauntlet or glove. It's really freaking me out that I might already need a larger sleeve.
Anyway, any feedback would be greatly appreciated. I'm really scared that I'm going to graduate to a higher stage before chemo is even over, and as I understand it, once you do, it doesn't go back down again. Thanks.
Whitney
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Stopping in as well for a question....and am not sure this is the right thread to put it out in.
I just started with the Jobst sleeve/gauntlet....can wearing the sleeve inside out make a difference?
and
and how should you tuck the sleeve in r/t the hand...... sleeve over glove... or glove over sleeve?
vacuumed today...took breaks...elevated my arms....did hand squeezes....
Happy Friday and Good Luck to Everyone....
((No Swell Vibes))
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Whitney, when I was doing chemo, I was just plain swollen. From the taxotere and from the decodron. Once I was done with chemo, pretty much all my swelling went away in about a month. Except for my left hand and left foot. That is where my real LE ended up being. I didn't wear any compression garments or wrap during chemo. I felt so crappy that it never even entered my mind to make myself more uncomfortable with compression. My onc didn't want me to do anything about the swelling until after chemo was done. Even my LE therapist wouldn't have done massage if I was still on chemo.
Brazo, Thanks for asking the question, does the gauntlet go over the sleeve or under. I know there is a proper way. I just don't remember which is right since I rarely wear the gauntlet. I hope someone knows.
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Whitney, hello!
I'm guessing here, but if you need a larger sleeve it isn't because your LE is worse, it's because the sleeve was the wrong size to begin with. If your hand is swelling you do NOT need a gauntlet at all, you need a glove. Probably not smaller, either, just -- you need the finger and knuckle protection.
Some kinds of chemo do make swelling worse, and once you're past that it's easier to manage. Not sure why you feel that if the swelling increases it won't go back down again, but that is fortunately not the case. If it stays large for a long time and fibrosis forms under the skin it is much more difficult to reduce and may not reduce completely, but for as long as it takes to finish chemo , that shouldn't result in that kind of problem.
Hope your fitter and your therapist will be able to work together to get you the garments you need for now. Let us know!
Be well,
Binney0 -
I was told to wear the gaunlet on top of the sleeve.
I am having lots of swelling under the arm. Is there anything that I can do at home for this or is it best just to wait till I go back to the clinic on the 17th. I am also wondering if I am not having some swelling in general thanks to the surgery. I have not had a good day today at all. Bruising and aches and pains from them moving me have set in. That is why I wonder if I am just more swollen in general today.
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Brazos and Firni, we did have a big discussion about sleeves-over-gloves vs. gloves-over-sleeves awhile back. As it turns out the general idea is to wear the glove/gauntlet over the sleeve. But several women (especially some who had problems with swelling in their wrist area) wear the glove/gauntlet UNDER the sleeve. Try it both ways and see which works better for you. Some people found it much more comfortable with the glove under the sleeve, because it kept the sleeve end from digging into the wrist.
Being bilateral I don't have much choice but to wear them with the glove over the sleeve, because I have to remove one or another for hand washing, eating, and generally slopping around throughout the day, and I sure wouldn't want to have to take the whole stupid sleeve off as well.
I cracked up, Firni, at your use of the word "proper" -- like Emily Post would have something to say about compression garments!
Be well!
Binney0 -
KittyDog I did think about you this week and hoped all went well. Sounds like your typical post op Hell.... I would just watch for now as it is so soon. I felt so awful after surgery. (( Feel Better Vibes ))
I think I wore my jobst sleeve inside out today.....I hope I did not screw my self up.
Happy Weekend and thanks for always helping me find my way!
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Hi Brazos- I wore my first sleeve inside out bcse I couldn't stand the feeling of the silicon dots on the top band. Eventually, I got a sleeve with no top band. I wear my gauntlets with whichever side of has smoother seams next to my skin -- that's usually inside out. ;-)
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