GRRRRRRRRR I HATE LE..........
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Melanie, I don't have truncal LE but I do have a compression tank top (to help with the belly that is too big
) when I want to look slimmer. The way I put mine on and off is like a swimsuit, step in to put on and pull down to take off. I have tried to pull it over my head and it is almost impossible. 0 -
Hm..why didn't I think of that?!?! haha I didn't buy it. I was just a little stressed after having spent so much time getting it off and on. So I didnt' try any more on either. I didn't want the same thing happening.
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I gained some weight one year, but though I could fit into a previous years bathing suit.........put the damn thing on, oh it went on over my hips ok.................got it up to my boobs.........thought i was going to suffocate it was so tight...........so then pulled it back down..............it got caught between my waist and hips, and reduced my waistline to around an 18 incher from a 34, and then couldn't get it over my hips regardless of how hard I pulled.............................solution you say.............................scissors....................cut that friggin thing off, and tried hard not to perform hip reduction surgery while I was doing it.
There wasn't even 1/4 of an inch between the scissors and my sorry ass.....................next time I will check the mirror before thinking I'm slimmer then I am..........................or not be so cheap, and buy another suit...............a size or 2 larger......................
Oh and did I mention 90 degrees, had just got a shower, body was damp, and no a/c on in the bedroom.....................I think you get the picture.
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Oh I also wanted to tell another thing that happened today. When I went in for rads I sat right in front of the check in desk. One of the receptionists was limping and grimacing when she got up. The other one asked her what was wrong. I saw her mouthing that she thinks she has LE in her leg from where lymph nodes were removed. Well I perked up..showed her my wrapped arm and said I felt her pain.
I then proceeded to ask her if she's seen a LE therapist. She said..oh no...I'm going to see my doctor in a couple of weeks. Meanwhile she's rubbing her hand down her thigh pretty aggressively. Probably encouraging the fluid to move in that direction. I just wanted to yell STOP!
I told her it was important to have therapy and yada yada yada. I felt like she just brushed me off. How do we make people understand? I feel as though it's the people that are in denial that make it ok for Physicians to blow us off b/c they let them to do it to them.
I try to tell myself that she's not me and if she doesn't care, I shouldn't. I just DO care! I want everyone to have proper treatment. IT's so darn uncomfortable.
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Melanie...................you look so young.............if I might step over the line...............how old are you.........................
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Melanie_Ann, it's hard enough to get the health care providers on board, but denial of LE is rampant--we've all noted how there are no pictures of compression garments on many sites devoted to breast cancer, and Binney was forbidden by Komen from handing out information on LE during one of their races.
At least she knew the word....
At my work, I see patients all the time with LE who refuse treatment--they just don't want to deal with it.
Why is there so much stigma attached to it???
Kira
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Ladies..............I don't know why people aren't more in tune with LE...............I was researching that the same time I was looking for a treatment plan.............surgery, after surgery, and all the bullshit that went along with finding out the "good new"...................well at least that is what people told me when they heard it was BC.................they said "your lucky, you got the good cancer"...................oh sorry I'm regressing...........not suppose to do that................anyway........I checked out LE right away, and even looked for it after surgery, and 2 weeks into Rads, and sure enough.........................I had it.....................and so it goes, and so it goes...............................
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Ducky - when people told you that you had "the good cancer" did you ask if they wanted it instead of you?
Sigh. The things people say.
Leah
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Leah...................yea I did, I said "well since you think its so good, maybe I'll light a candle in church on Sunday, that you get "the good cancer".......................maybe that is why that idiot doesn't say hello anymore.....................guess i was rude.....................but it was all new then................now I would probably just "deck them".
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Leah, I had someone say to me "well at least you didn't get Pancreatic cancer like Vince did...................Vince being my husband............................so I guess that is the yardstick people measure my cancer by..........................Is there really a good one................
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How hysterical Melanie! If you had gone out in it to scan you probably would have been picked up and paid for some services. If it had been me I would probably have been arrested for impersonating a hippo! Yes, next time step in and out of it. I guess we need to put some scissors in our purses along with ointment, bandaids, antiobiotic, etc.
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"I feel as though it's the people that are in denial that make it ok for Physicians to blow us off b/c they let them to do it to them." -- Melanie_Ann
Melanie_Ann, that is so painful to watch.
You can't convince them and they're so deep into denial they won't budge. They don't believe you because they don't want to, and there's nothing you can do about it. Makes me crazy too. But over and over I've seen these people come around, in their own time. Denial is a form of grief, and some folks just take longer than others to grieve this rotten reality. What you said to her will ONE DAY be a help to her as she thinks back on it. She'll know she's not alone and that someone cared about her enough to try to steer her in the right direction. With your words you've given her the courage to cope with it when she finally decides to.As for the doctors getting away with ignoring our reality based on women like this, you're so right! But that just means that those of us who aren't in denial need to talk a little louder in order to be heard!
Keep talkin'!
Binney0 -
SOHARD,
I am sorry you are having to go through all this crap. If a SNB on your healthy side would not affect treatment decisions, then why do it? If they can't come up with a very compelling reason, then stick to your guns. Hope tomorrow is a better day for you.
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SoHard,
I totally agree with sisterinspirit who said it so well: if there's no compelling reason, then why do it? Because you can't do it after a mastectomy is not a good enough reason, IMO.
So many surgeons get dogmatic and they need to get some push back that you don't do a test, or especially a procedure that can lead to side effects if it doesn't improve the patient's health, or yield important information that will impact treatment.
Protocol doesn't cut it, IMO.
Kira
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ducky- I'm 27.
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THANKS FOR YOUR SUPPORT ALL...
I spoke with my oncologist and I told him I did not want to do it... He said it was procedure and not a cancer issue... He said he understood, it is my decision...
I see breast surgeon Thursday... I will be telling her the same thing...
MRI is clear on right Cancerous side... I will not touch nodes unless they find cancer... I NEED MY RIGHT HAND...
FINAL ANSWER...
CANCER IS THE GIFT... THAT KEEPS ON GIVING...
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Melanie...........you look like a little girl in your picture.............I am so sorry this happened to you.........I havel grandchildren your age.............twin grandaughters, 28, and another grandaughter 26................I have 18 in all, but those 3 are your age..............Your beautiful, and I wish you nothing but the best................you have an amazing sense of humor........keep smiling, and prayers and hugs to you.......................
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so hard to be me... so glad that you made your decision, your way; and they respected it...
interesting experience today. they found a mass in my thyroid, and i was at the specialists office...
forgot my wrist cuff for bp; so told nurse, left side ok; but not too much pressure, im really at risk of a flare...i got the rolling eyse,etc.. then, she pumped the electric one up; and my hand turned PURPLE!!! she looked on horrified.. then, i ripped the damn thing off, and siad, do it manually; or he doesn't get one today!!!
she said " we never see women who CLAIM to have LE have a problem oh my!..went and got the maual right away, and released quickly..and wrote the whole thing for the dr.. so, i guess this office won't doubt me again!!!
i love the "claim" to comment..we had a little discussion of that comment with the dr.. who said..there's no such thing as "claiming " to have LE' if you get it, you KNOW...yeah, a beliver in my corner. thats' one for our team, ladies......3jays
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Melanie Ann - I had a similar experience trying on a compression cami in Target - I got it halfway on - over my head but couldn't get it past my shoulders, couldn't get my arms free, couldn't breathe - I squirmed and pulled and tugged whatever I could reach. I was just about to try to get out the door and get some assistance - can you imagine? Bare, scarred-up chest, arms stuck over my head, cami over my face stumbling around Target?! I finally managed to fling it free. Needless to say, I did not buy it - and it was the largest size, so that style is out for me. I still get the giggles when I remember the panic-stuck dance I did. I haven't seen it yet on YouTube, so maybe they're not lying when they say there aren't cameras in the dressing rooms - that video definitely would have gone online. 0
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Wow! These camis are becoming weapons of mass destruction! Maybe a warning should be put in every dressing room. I am so happy I just bought and put on at home. B
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Sohard--I am so happy you are going to have things your way. I hope you are feeling more at peace now. Good for you for standing up for yourself.
3jays--You have reinforced more for me to NOT ever have bp on affected arm if I can help it. I hope you had no after effects are the purple hand went back to normal!
Becky
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Bookart - I have had the same experience trying on swimsuits...the panic stricken dressing room dance is no fun. I always think of when Winnie the Pooh gets stuck in Rabbit's door after eating too much honey.
Have you guys seen the "Rescue Me" commercial where Denis Leary runs into a woman with cancer and asks her what's wrong with her? She says, "I have cancer." He says, "Is it serious?" And she says, "It's cancer." And he replies, "ohh...right."
That cracks me up so hard - people really do have the dumbest reactions to us, and I think it's just because we scare them. Nobody wants to be close the person that got struck by lightening. And LE is like the double whammy.
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Suzy, I wonder if it's a youTube video. I love "Rescue Me".
You said it, as always, we are pariahs--we strike fear into others and make them uncomfortable--it's the basis behind the "be positive!" demand on cancer patients--it makes it so much easier for others to be around us, because it lessens their anxiety.
Kira
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HAHAHAHA! A relative has a destination weeding in a month, which would be a 5 hour flight at least for me. It has been a rough year with my LE. When I told someone that I could not go to the wedding given my personal medical problems with flying and the lack of a good medical facility on the other end of the trip if I should again get cellulitis:
" Yeah I mean you may need to be hospitalized and be sick when you get home, but you really aren't going?"
NO! HAHA! Would you come over here so I could poke you in the eye with my pen? WHY NOT?Yeah it may hurt but you could always go to the doctor, squint, and wear a patch for a few weeks....
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Moogie, that takes the cake! Unbelievable.
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moogie - I agree with Tina337 ... unbelievable! Clueless. Stupid. Ignorant. Insensitive. Cold.
It never ends and it's harder dealing with family and friends who just don't get it than complete strangers who just don't get it. Falls in the same category as ignorant & beligerant docs who don't listen to us. So, so sorry!
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Moogie, I think you're being restrained in just poking the person in the eye with a pen....As Suzy says, there's no shortage of stupid.
Absolutely, completely clueless, and zero empathy.
Kind of makes you want to have a compressed air boat horn and blow it into the phone or their ear when they stay moronic stuff.
And you just got cellulitis going to NYC!
Clueless idiot.
Kira
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Halleleujah!!!!!! My MLD therapist and my fitter talked to each other!!!! My therapist has talked her through my need for a one piece sleeve and glove. Finally!!!! I'm so happy!!!! Can't you tell by all the exclamation points?
I know this is only the first step. I know the thing has to made and it has to end up fitting me, etc but this is a dream come true that the one person who knows my situation the best has spoken to the person who is fitting me (with little success). There's a light at the end of the tunnel.
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Hi gang -- today, I was outside for hours in ridiculously hot and humid weather. I wore my sleeve & glove with Komprex under it and, size-wise, my hand/arm looks pretty darn good. However, I seem to have developed a rash on my hand and arm that looks a heck of a lot like diaper rash (juzo/jobst rash?). It's not infected and doesn't itch, but it is pretty raw looking. I was thinking about putting zinc oxide based diaper cream on it. What do you think? KS1
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KS, do you know how your skin reacts to diaper cream or not? You sure don't want to experiment at this point, so unless you've done this to your arm before it might not be a good idea. How about a cool compress instead?
Cellulitis also looks like diaper rash in some cases, so keep a close watch on this. Maybe outline the area with a marker for reference. Elevate and avoid compression this evening until you see it retreating.
Yikers! Always something!
Hugs,
Binney0
