GRRRRRRRRR I HATE LE..........
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Binney - until this week there was no sign of it being in my arm - It was all breast and ribs... I don't have any clue about wrapping my arm - I called and left my LE therapist a msg and he msged back to elevate it - I think he is hoping that's all it needs? Things here just are in a domino - my sleeve was just a precaution off the shelf..and yes I was measured..no problems using it last week..
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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!
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Awwwwwww GMAFoley----i am so sorry you are going throu this...I can keep talkin to you if thats what you need....just wish i lived right next door to you...I tell that to Ducky all the time...only thing is she is a lot closer....just imagine all the wonderful sistas all giving you love,support and a big huggggg.
There did you get that hugggggggggggg?
My PT gave me a new breathing exercise.Inhale(smell the roses)exhale (blow out the candles...10x 3x a day....i love it.
yesterday i came out of my apt to go to PT and found my neighbor thrown against the wall.I walked over to her to see if she was alright....I told her to do those exercises right there and she was able to walk to the elevator for her daughter to pick her up....I saw her today and she has been doin it and claims its working...what do the pros think?
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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.
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Ducky- I know you are completely miserable right now but.....YOU ARE MY HERO! If someone had said that to me I would have mustered up a dirty look at best, gone home and wished I had said what you said! I hope she learned a lesson- what a cow! As far as the wrapping- SERIOUSLY? They expect you guys to master that ****? With one hand? This frickin' disease is just so damn absurd. 2012 and the best they can come up with is mummify your arm? Pay someone $1,000 to stroke your arm? And buy enough first aid supplies out of your own pocket to bandage the entire US infantry from World War I? For those of you who have been dealing with this for years.....HOW ARE YOU NOT COMPLETELY POSTAL BY NOW? Sorry, I'm probably not helping but I validate every feeling you are having- especially the cursing and throwing of objects. (((hugs)))
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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???
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Oh SHIT!!!!!dam it to hell.im sooo sorry for you Ducky and GMAF....
Im lost for words.just know im prayin for both of you.
I have no right to complain...YET!!!!!!!
gentle huggggs K
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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.......
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Kay, can you explain what this "muff" is exactly?
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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.
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Ladies.......I see I'm not alone..............wasn't cancer enough..............does it ever end.................
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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.
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Oh Ducky you made me laugh out loud with your reply to that woman.
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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
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nibbana, now that's a spunky attitude! You figured it out early, now you have the tools to wrestle it into submission, so I think your LE is going to surrender to you. Keep us posted on your progress.
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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
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Good morning ladies. Not loving the lymphediva sleeve as well as my juzos...the keep bunching at the elbow every time I move. Love the way they look though, just gotta keep pulling the crease at elbow out.
Ducky....I know the wrapping sux --had to do it for over 3 weeks--but it helped so much getting the fluid out.
I have been naughty and not wearing my nightime garment. Sleep so much better without it and just does not make a difference with my hand swelling. Still wake up in moninig with fluid either way so figured I at least am sleeping better. Getting tired of the "what is wrong with your arm" questions. And then with friends when you explain they give you the "well at least you are alive" GRRRRRRRRRR! I know I should be grateful to be alive but LE just bites.
Maggie
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Maggie - I get that comment even before we found the breast LE last month - wonder what is going to happen today - It is my first day at the fabric store wearing/donning(learning the language - is that correct?) my sleeve
. Not looking forward to the comments - any suggestions on what to say??? 0 -
GmaFoley, there was a thread here once called "I was bit by a shark" (or something similar) with answers to that question. I don't know how to post threads but I have great faith in you, if you don't use the shark comment you can think of something yourself!
Leah
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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
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I just tell them that I had breast cancer. Then they just do not know what to say and are trying to figure out the conncetion. I think I will use the shark or alligator bit my arm thing.
Maggie
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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..................
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Maggie,
Living in FL... we can really use the 'I got bit by an alligator' line !
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I hike alot, I can say I was mauled by a bear but fought it off.
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nibbana, you really got my attention here!! In a week, I'll be starting a five-day kayak/camping trip in an area well frequented by bears. We are having a spirited discussion about the pros and cons of bringing along bear spray. Some say it's not useful because you can't deploy it until you are sure of the wind direction and distance to the bear, to avoid getting it on yourself, and by the time you figure that out, you're bear meat anyway. Others say you should have it and use it and worry about the 'little details' later. Seriously, you were mauled by a bear? I think I want your advice here!0
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Finally decided on left MX (prophylactic) and not reconstruction. The risk of increased LE just does not seem worth the additional surgeries. Right now I have been able to manage LE, I don't like it, but I can manage it. The radiaition doesn't help matters - just too many possibilities of complications. I don't have any more time I want to devote to surgery for a pair of fake boobs. I can always change my mind later but I don't see that happening.
Already called my surgeon and have an appointment on Tuesday to talk with her. Hoping for surgery on 7/23.
Done. Decision made. Feels good. Need to get on with my life and not be consumed with BC. Little Martha (LE arm) has already claimed a life of her own so from here forward it's me and Little Martha finding a way to live together peacefully.
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Carol
No I wasn't mauled, that's a variation on the shark story
Keep a clean camp. I drive everyone crazy interrogating them "is all the food hung up, every bit of it!" a clean camp will keep bears away.
If you meet a bear on the trail, they are mostly afraid of us and not even interested in us. A patch of huckleberries attracts a bear more than a hiker.
Have a great time on your canoe trip!0 -
I survived my busy day.... just found out my kids are showing up tonight! Oh crap!!! I was on my way to bed - they will be here in about 3 hours....
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Carol57 -- Did you buy the allegra sleeve+gauntlet combo for your canoe trip? If so, what do you think? How long is the sleeve portion? KS
PS About the bears ... don't forget to hang your toothpaste!
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Ducky, I am glad I stayed up a few more minutes and saw your post. You are so funny! Sorry you had such a frustrating experience.
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