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

Ducky  and Everyone else here!!! - I understand how you felt a few weeks ago when you were just going to give up... I have just started this LE "management" and yesterday, not just the truncal but the arm was swollen..  I realized it is a constant fight we have to do to "Manage" the LE.. Problem is I don't feel I can do this.. I wish we could all run and hide from this @$#@%!@%! I guess the realization that this is another "chronic" label and the LE T was talking "managing LE" - I am down down down.. Please keep talking to me girls... I don't feel very good about this  I can't even GRRRRRRRRRR anymore.. 

Gma, I can tell you two positive things:

1. This gets easier, and,

2. We're all here for you!

And we all get it. Be kind to yourself. There's grief involved, and good grieving takes time. You can do this!

Giant, gentle hugs,
Binney

Yes, Gma, I hear you. This is really tough, no question about it. Hang in there!

Constant achiness is an indication of an unhappy LE arm (or chest). Doing self-MLD is a good start, but when you're cranked up from pain and frustration it can be VERY hard to do that well -- instead of being able to relax and to use that slow, gentle skin-stretching motion, we get too fast and too firm and can make things worse instead of better. So go lie down with some very slow, quiet music, take some slow, deep abdominal breaths, and try to do as much as you can of your self-MLD routine. 

The most important parts to emphasize right now are the neck node clearing and then the chest clearing. So if more than that is too frustrating to think about, just do that much. You can do it every couple of hours, but each time you have to slow yourself down and relax so you can do it with gentle patience.

Are you staying well-hydrated? Hard to remember all the time, so put a supply of water close by, with a pad of paper and a pencil so you can note the time whenever you take a drink. That way you can see your own progress with staying hydrated, and it gives you something to congratulate yourself about. We NEED that!

I see from your signature that you're aware G-d loves you and is with you through all these "hoops," so remind yourself of that, and start talking to him about this. You don't have to use nice language--he gets it!

Forgive me for not remembering, but, do you know how to wrap your arm? If so, VERY slowly and gently, wrap it. Don't get too tough about it. Pretend it's somebody else's arm and you're being as gentle and sensitive as possible with it.

Go ahead and cry! Or bellow. If you have to stop work to take care of yourself, do it. This is NOT an easy road, but you're not walking it alone--we're all here with you. Do what you need to do to take care of YOU. You're that important!

Hugs, prayers,
Binney

Gma, I'm hoping that's all you need too! You'll see him next week, right? Until then, hydrate, do some neck and chest clearing, and elevate as much as possible. Even at night, on pillows. CAN you elevate, or do you have to work today and tomorrow? Either way, grab as much "elevation time" as you can.

LE stinks, but sometimes we get lucky, and with such early intervention you'll be on top of this in no time. Keep us posted!
Binney

Ladies...........my wonderful ladies............went to the new LE-T today..........result......I am wrapped from my fingers "each one individual" to the very top of my arm.......................She does things completely different then the other person.......................I HATE IT..................I am having to do this myself until she is ready to measure me for another sleeve......either custom......or counter sleeve..............she will decide.............she is sweet, and does know her stuff

She said "we are starting over, like this is the first time you were treated............fun, fun.........already ;spent clost to $1,000 in co-pays, only to begin again.............what bullshit...............anyway...........I am padded from my wrist to my upper arm.............then gauze wrapped around each finger, and then 4 ace bandages from my wrist to the upper arm...........................I was was coming out of the $1.00 store, and a woman said to me "hmmmmm, nice arm".....................I said "f--k you, and the broom you just rode in on................she ran..........really she ran to her car.............guess she thought I was going to "club" her with my "arm weapon"........................

You should see me struggling to type................hysterical...........but I will "plow ahead" and tr;y to keep my sense of humor...................."that should last for about 10 more minutes.

I know I won't be able to do the wrapping.......before it was just a long piece of foam........this is "now listen"..........1 piece of foam around my hand and palm "after she wraps my fingers in gauze"........then 2 more pieces of foam that go around my forearm (and they are seperate and have to be held together while I try to  wrap)..........2 more pieces of foam that go from my upper arm to my shoulder..........they also are seperate, and have to be wrapped.............then after all that is done.............I have to completely wrap the whole arm in another bandage to "secure" the entire project.........................lol, hahahahahahahahahahahahaha.........like that is going to happen...............God help the neighbors and my "cell phone"....................last tim'e I tried to learn to wrap.....I threw it across the room..........ever see a cell phone in 3 pieces..........not pretty............and my neighbors take their kids in and shut the windows when I say """""""""wrap time"""""""""""""....................lol.........oh well........................off to the races again...............

Guess what...........if I didn't laugh, I would cry ..............have done that too..........hugs.

Ducky - I hope that doesn't happen to me next week. *****HUGS***** I will be here for you too.. We can cry together.. I know I know be strong

Binney - I did  my breathing, neck and chest area. Had to pee real bad after. so either drank enough and/or did the MLD correctly.. I do see  LE T one time next week on weds. and yes I have to work the fabric store on fridays - I will wear the sleeve and elevate when I can... Its gonna be a longggggggg day.. Pray I am better tomorrow..

EDIT: I just hit the wall.... it feels like all my energy just drained out my toes... Did the MLD do that? or did everything (emotions etc) catch up to me??? 

Ducky, that wrapping you are doing sounds just like the way I was told to wrap. I never thought i'd be able to do it for myself one handed, and especially left handed, but I am a real pro at it now. I am sure you will as well. One thing my pt did that made it easier for me was make me a " muff" as he called it to hold the pieces together for the upper arm and lower arm. If he hadn't done that, there is no way I would be able to hold that in place while wrapping. I can't imagine how anyone could do that. Maybe your pt could put the foam pieces for your upper and lower arms in a muff as well. I know how you feel about starting over. When I saw him a month ago, after just having had him release me in January, he wanted to put me back in intensive therapy and have me come and get wrapped by him every day for a week and spend the whole time wrapped from one day to the next, and then get measured for a new garment. Yikes, I. Didn't even do that the first time I got diagnosed, and I had just gone back to work full time. He said the reason I didn't do it initially was I was just starting radiation when the LE came out, and it was just impossible to stay wrapped 24 hours a day. I was wrapped 24 hours a day though except during radiation for six weeks of radiation, I was quite upset about starting over. We decided that I would just keep myself wrapped for a week and get remeasured and see how well I was able to do. He thought it was good, and I just got my new garments yesterday. Two of my fingers turned absolutely purple from the glove. Mt pt told me to put a highlighter in the fingers of the glove after I wash it and see how it goes after that. I also got a higher compression in the lower part of the arm sleeve and glove than the upper arm. I like the higher compression, but I think I need a higher compression in the glove as compared to the lower arm sleeve. My hand s all puffy when I take the slleve and glove off. The swelling seems to get pushed from my lower arm down to my hand. I thought I had all this under good control. Grrrrrrr.......

I will try to explain it. The first thing he had me put on my arm was a stockinete. He made this by cutting a piece of tubular bandage about the length of my arm. The tubular bandage material is what he used to make the muff. He cut it a little longer than twice as big as the foam peces. Then he put the foam piece inside the tubular bandage and wrapped the bandage around the foam and taped it to stay put. Then I just slipped it on my arm and could just wrap the compression bandages around it without having to worry about holding the foam pieces in place while I was wrapping. I will try to post a picture because that will show you what it's like a lot better than I could explain it.

Ok, here's the report. 

Saw the LET, (that's a good acromyn, saw my LET today), I got the lymphedema in my left arm.

So now we're in combat mode. It's code red, the fighters are being scrambled. 

I have to MLD like my life depends on it, and will buy an off the shelf sleeve next week. I will go back to seeing my LET once a week. 

Hey Ducky--I KNOW you have the "stuff" in you to master this.  It finally sounds as if you are wrapped correctly!  It will end and you will see results.  I did have a hard time mastering wrapping with my left hand but I did finally master it and fairly quickly.  Hang in there!!!  I have faith in you. (Yes, I can hear my name in your next expletive!)  I love your sense of humor.  Becky

Ducky the ladies are correct - I know with all the crap you have been through, You will master this and get better soon... I will be there holding you good hand.. Imagine all us ladies there helping you learn to wrap... As Binney has been telling me... "Breathe.. It will get better.. You can do this.". My own thought on that is a sarcastic "SURE".. but I woke up this morning with a full day of work with 2 jobs today,  and my arm swelling is down a little and my ribs aren't hurting as bad as yesterday.. I think, maybe, I can do this.. IF you are there holding my hand too.. If you hang in there, it gives me strength to hang in there... Love you Ducky and Granny and Binney and Kira and Jo-5 and Becky and every lady on this board that has been helping me

Went today to LE. 7am appt....what the hell was I thinking............anyway.............I was an expert wrapper with my last therapist..........my foam was on a "roll"...........as i said before, this is cut pieces of foam that wrap under and around my arm............this is not an easy task....................the other one was a piece of cake compared to this...........she is going to try to make me a Muff....................another of our LE ladies said they did this for her, and it worked, so I mentioned it today..........she said she heard of it,and will try to do something for me that is like it................good news.

I'll keep on plugging along..................honestly, can we do anything else..........lol

Ok......................what the hell is with people...............was in BJ's today after I had been to the LE therapist...........all snuggly and cutely wrapped from finger tip to armpit, standing in the "deli" lin;e which is not a happy place to be anyway when your number 50, and theyare working on number 44.............then some bitch comes and says "oh sir, I missed my number, I was 41, do I have to get another number"...........and the freak behind the counter says........."no I'll take you after this customer I'm working on"................well he says to her finally done..........what do you need...................she pulls out a friggin list longer then my bandaged arm, and each f/n thing is 1/4 lbs......................and its about 15 things.................I was so pissed I was ready to punch the shit out of her for asking to go ahead, and beat the s hit out of him for saying "yes".

So, a woman comes up, and takes a number.......'(I'm standing next to the little machine you pull them from), looks at me and says.................WOW, I BET YOUR UNCOMFORTABLE............. to which I commented l";yes I am"..........................she then proceeds to say...............what's wrong.................I said "well since I have a lot time to explain, considering this rude woman right here next to us asked if she could go ahead of all the waiting people because she decided to shop instead of standing here like the rest of us, missed her number, and  came back and asked to be taken, and the "loon" behind the counter said "yes"..........where would you like me to begin.............recently, or do you want the entire story.................she said "well I'm sorry I asked"..........I said "you should be cause frankly it is none of your business, but since you would like to know.............they just reattached my arm, and the bandages are holding it in place....................my daughter laughed so hard she could not contain herself.................and then said to the woman............guess you won't make comments to anyone else in a hurry.....................she walkeld away, didn't even wait for her lunchmeat..............wonder why..................

I hike alot, I can say I was mauled by a bear but fought it off.