GRRRRRRRRR I HATE LE..........
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I've been helping my son by painting a few rooms in his new house, one room I was very excited to paint because it's the playroom of my future-step-grandson. It was fun to do and I wanted to do it but I shouldn't have, it was a little to much work for me. I was doing OK until I came home on day three so tired that when I started to do my routine exercise and message I started crying because I was exhausted and wanted to go to bed, I cried the entire time. Then I felt bad about being such a wimp. My spouse came to the door and asked if he could help. I can't even write what a told (yelled at) him, then I felt like a wimpy witch.
That's not even the worst thing I did, I got paint on my custom sleeve.
I'm letting this condition control who I am. I really hate this!
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susan, you're not a wimp; you just have limits as we all do. LE can sure send us over the brink!
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(((Susan))) You are not a wimp,,, LE SUCKS!!
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You are not a wimp Susansnowflake. I think we all need to mourn the way things used to be before a serious life threatening illness, followed by a lifetime of dealing with LE. On one hand we're thankful for everyday we have with our families; that's why you were doing the painting project to help your family, and on the other hand, we are just plain angry, and outraged at the pain in the butt this LE is. I over did it a little more than a month ago, and am paying dear now. I was getting my house ready for my son and daughter in law to move in, while they finish their house. I love digging my heals in and doing household projects, so I am in the anger phase right now. To add insult to injury my GP tells me yesterday he doesn't understand why this LE got so bad 14 years after surviving breast cancer! I explained to him that I have been dealing with it all along. Grrrrrrr I hate Le is the correct title for this post. I don't care what some say that LE is not painful. It is! I feel everything from aching, burning to heaviness. I can't tell you how many days I say to myself..."I want my life back", then I feel guilty because I have survived something that tried to kill me.
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We are all trying to cope the best way we can but some days LE just rears its ugly head and brings us down. Thank goodness we have these threads to lift each other up as only us can truly sympathize what we deal with on a daily basis.
It's totally fine to express your self here. No wimps here. Its normal to have lousy feelings, feel sorry for ourselves, even healthy people have those feelings. So I invite all to rant, scream and cry. I sure will.
You girls are doing wonderful despite the anguish that LE brings on. Look what you have accomplished in life. You move, you shake, and you live as full as you can. That might not mean climbing the highest mountain but you sure can get half way up. Some of you are students, some are grannies, some are helping family's and all are contributors to society. You are the best and all get medals today! Serge ahead girls!0 -
Thanks y'all. I have always handled it, and by that I mean everything, I've never before said or even felt "poor me" I used to think that meant I was a very strong woman. Now I know it means I was a very lucky woman. Not so lucky anymore but, not unlucky either. This is manageable so many people dealing with things that aren't.
I still hate LE but all I have to do to deal with it is live with some limitations. Just wish I could accept those.
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Hi ladies, I haven't had any issues for so long so I need to refresh my memory... I burned my wrist on a fry pan this morning. Until it heals - I shouldn't wear sleeve? That means I can't exercise on my rebounder without risk of swell?
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Well, if its raw you won't get a sleeve on. My MLD girl gauze wrapped my burnt hand daily with flamazine for a few days until it was healed. She only used gauze no bandage wraps or foam.
I don't think I was in a sleeve then as I didn't have LE but saw a mld girl preventively once a month since my breast surgery.
Soon as I was done at emerg I went to the MLD girl the next day. My palm and fingers were blistered badly. I remember her draining the hand as the back of the hand was not burnt. It really helped but I believe the burn contributed to my mild case of LE.
As for exercise it may cause a swell so I would be careful. The area will already have lymph fluid in it and you don't want more while its trying to heal. Elevate, water,medical treatment and ask your LE person about it.Take it easy till it heals.
Oh I remember that I stuck my hand out the window while driving to emerg. It took the pain down a lot while travelling. My MLD girl said that is because the pressure from the air was applied. Of course when I didn't have it out the window the intense pain returned. I was a newbie back then and didn't mention the word cellulitis so emerg let me wait 5 hours. I have now learned to use that word while in emerg.
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There was a thread about a serious burn in this forum https://community.breastcancer.org/forum/64/topic/832762?page=1#post_4435521 , several months ago. You might be able to contact the poster and get some helpful info.
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That was me!! I had a definite second degree burn - there are pictures in that thread. It healed wonderfully, I did not wear my sleeve for at least ten days while it healed. Luckily, I didn't have any resulting LE issues - have to read through the thread again, I don't even think I saw my LE therapist during that time. Keep it clean, treat it with antibiotic ointment/cream, keep it covered and ask for an oral antibiotic.
Ouch, I hope you feel better soon!
New pic - barely even a scar!
Jen
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It's doing ok today - I put cold water on it and then a bit of calendula and the blister shrunk and didn't break open. Glad I responded to what to do right away. Thanks for all your help.
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I burned my hand on the oven rack two weeks ago. It blistered and broke. Didn't wear a sleeve, but I've mostly truncal LE. There was a day where I was thinking I needed to head for the PCP for antibiotics as my hand was hot and red over a 3" radius, but it calmed down. I had no swelling, just that scare of possible cellulitis. I'm reluctant to take preventative antibiotics since I am already allergic to some and my mom to almost all of them.
I exercised as usual. Didn't cause a problem. You just have to watch it and maybe be more proactive than I if it looks like an infection is flaring.
I've had all kinds of cuts, scratches, and burns on my poor hand, but have escaped the worst so far. Knock on wood. Knock again.
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doxie, I'm knocking on wood right along with you. Still left-handed only as I continue to recover from right-shoulder surgery, I'm pretty clumsy and managed to burn my left hand on an oven rack, too, and of course it's my LE hand. Fortunately, nothing seems to be blooming in the cellulitis department, and the burn is healing slowly, but well.
What a minefield life with LE feels like sometimes!0 -
knocking on wood for all of us!
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I bought some thick gloves that I put over my compression glove to take hot stuff out off the oven.I like them. They are about 15 bucks at the kitchen store and are a special fabric made to withstand heat. Better than clumsy ovenmitts but I still have to be careful.
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I seem to be a major clutz. I managed to go hiking at Glacier National Park this summer without incident, but can't go up stairs without tripping or down without missing steps. I'm always cutting my left hand when chopping veggies and getting burns on my LE right hand. And then there are the cat scratches....
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@doxie...I actually went to the Dr over a cat scratch, freaking out thinking that my LE would blow up. I haven't ever over reacted to much of anything in my life but this, LE, is so....(thinking because the words just don't fit)......random, personal, individual that it's hard to know what's going to happen and when it's going to happen or how.
I gave away a ring a few weeks ago. It was my grandmothers engagement ring, it was vintage, very roaring twenties and I didn't want to damage it by having it cut off if or when. Not a big deal but a reminder that LE is treated like not a big deal, and sometimes it is.
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The only times I have had a reaction was when I was bitten by a spider/bug. Within an hour it swelled from pea size to half my forearm. A round of antibiotics and almost a hospital stay.. I like the idea of drawing a circle around the affected area and if it goes outside the circle, head directly to ER... Saved me more than once.
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SusanSnowFlake,
I probably should have trekked to the doctor when my hand was engulfed in red and heat, but I was in the middle of a serious deadline, and, as usual, I put off my needs. Also, I've seen my hand react that way before with cuts, burns and scratches. My breast did the same after nipple reconstruction, but was calming down when I saw my PS. I seem to have a very strong immune system. Don't get the flu and colds.
Then why did I get BC?
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doxie, I too am one of those people who never got sick, before bc. Blessed with a great immune system, I guess. (Not anymore thanks to chemo.) I also got my period fairly late, had my babies fairly young, and nursed them for over a year each. I was normal weight, fit and strong (not any of those things anymore either, thanks to tamoxifen) and do not drink alcohol. I love broccoli and I get plenty of vitamin D. In other words, everything "right" and yet I still got cancer anyway. It's a crapshoot.
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I could be Jennnie's twin. My sisters said i was the most physical and mentally strong person.in the family. Even climbed mt rainer and skied down thousands of feet.crapshoot for sure
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I've had ONE treatment of radiation, and it made my arm tingle and heavy. I did wear my compression sleeve. I haven't had any swelling yet--I'm stage 0-- and I'm worried about this making my lymphedema worse and also about brachial plexopathy. Here is my question:
Did anyone decide to get a mastectomy AFTER their lumpectomy to avoid radiation problems? Please help. Thank you.
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Sloan - I had a double mastectomy the first time around so avoided rads. Unfortunately w/the recurrence I had to have chemo before ALND surgery & rads afterwards. I did get some radiation fibrosis & cording, but the LE hasn't progressed along my arm - still truncal & breast. And usually manageable, although I do wear a compression vest/bra 24/7. Hope someone else has a better answer.
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Sloan: my BS pushed for lumpectomy and rads,,, why I don't know, since I had Paget's and my whole nipple/areola area would have to go. I opted for the MX from the beginning because I wanted to avoid rads. And I knew nothing about LE back then,,, I just didn't want to do rads for 6 weeks,,, and I figured if the nipple/areola had to go plus clean margin,, there wouldn't be much left,, so I pushed for the MX.
You may want to post your question on a separate post to find some non-LE people who may have been in that situation. Maybe under the surgery section.
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
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Most Dr.s have no clue what LE is, and when they do they tell you wll the reasons why BC did not cause it or any of the surgeries, treatments, or what "you " did or din not do caused it.......its all Bull.
Mine began just a couple weeks into Rads....I had to tell them that something was wrong.......tried everything.........specialists, bandages, sleeves, glove, night sleeves, bandaging all the time..........finally a "real sleeve".........none of them fit, no one could get it right.......spent a fortune in co-pays just to get someone who knew what the hell they wee doing..............I just kept meeting more and more idiots...........I finally gave up, gve in and said "screw it"...............does it hurt sometimes "yes"...........is it ugly...."yes"............I just decided that cancer is the gift that keeps on giving...........you just sit and wait for the next shoe to drop, all the while smiling at the people who want you to tell them your fine...............so like a good soldier that is what you do.....................other then the ladies here......who really know what we go through...........0 -
Oh duckyb1, yes, I smile and say I'm doing well, and now here I am trying to get some help with my LE. It's consuming me these days.
I just finished my first week of rads. I still can't decide where my neuropathy ends and LE begins. When I wear my sleeve, my arm sparks with electricity. When I don't wear it, it's heavy and achy. I'm not sure whether to exercise and move around after rads, or go to bed early and let my arm rest. I elevate it and brush the lymph down a lot -so far no swelling- but geez, 5 more weeks of this aching, tingling and worrying that it will get worse? I don't even know where to start in dealing with this.
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@ ducky and sloan......I have stopped saying "I'm fine" when I'm not. I say "I'm still here" which people turn into what ever they wish. I don't smile at the doctors office when I don't feel like smiling.
I was diagnosed with LE 1 year ago right after rads. My experience was unique. at the beginning of rads I told the Dr something was wrong with my arm (shoulder) and I couldn't get it into the position needed during rads. My doc brought in a therapist who suggested I was suicidal because I was delaying rads, so I barreled through it on pain killers, didn't want to be thought of as sad, or pathetic. Turned out my shoulder was out of socket which I found out at LEPT after I'd finished. I realized that some things never change even a woman Dr treats woman like hysterical complainers.
That experience taught me if I have a complaint, get loud and if I don't get what I need get louder. Nothing like saying the word Lymphedema loud enough for a waiting room full of woman getting ready for surgery to get all kinds of help!
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this disease taint funny at all, and even harder for those of u on Tx .. on top of it all, Im not on Tx. but still, up here i dont believe we have enough help .. i mean we have self help but you need more than that especially with the fit of the sleeve anyway, hope it gets better for you... Susan Snow you have to speak up for things ask and ask.. sometime they try to make it look like you are the one with a problem this was said to me last week and I said, nothing wrong with me, my issue is I just want a sleeve that works Namaste to all Sierra
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Well, let me tell you my adventures with the hand surgeon today. First off,, I always wear my sleeve to appt's to discourage RN's wanting to take BP's there. Well, this one ignored my sleeve and asked for my left arm,, and I'm like,, you can use the right one. Dramatic sigh, and then she put a wrist BP machine on the right. I never had BP taken on wrist before,, it was an automatic one and it got tight,, so glad I didn't use lefty. Then surgeon came in,, and after this and that,, he asked about my LE. "Is it stable?" "yes, I'm managing it." "Well, there are studies that show that BP's and IV's done quickly on the affected arm, may no difference with LE." Then he quickly moved on,, but I'm thinking,,, ok,, your office has two strikes already. He is conservative and doesn't rush into surgery which is good,, but I wonder if I do decide I need surgery,, I will expect to get grief about not wanting them to use my LE arm.
Even though most of my LE issues are truncal,, my arm is very mildly affected,, my LE therapist said, no IV's, no BP's,,,, and I certainly will not do anything to make it worse. So,,, it was an annoying appt,, and one hour of my life that I'll never get back. OH, I'm to do exercises for 4 weeks,, wear splint,, which I've been doing for months now,,, and go back in 4 weeks. Maybe then I can push for a cortisone shot and see if that helps.
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