GRRRRRRRRR I HATE LE..........
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If one more person asks me if I have tattoos on my hand and arm I am going to scream! I had to tell someone yesterday that I wear this because i HAD breast cancer, and it shut him up
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Shorfi.....I SURE know what you mean.....the fact of the matter is .... I would never ask someone about WHY...they are wearing a sleeve and gauntlet or comment on it....but that is ME!! I, would LOVE to go one day in New Jersey without being asked......people can say......I do not mind being asked......it is a chance to educate them....REALLY?? Once you even try...they shut down...because they are embarassed....I have come to think...you cannot educate STUPID!! Liz
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Grrring about the fact that when I put a plastic glove on top of my compression glove to prepare vegetables it gets so sweaty and that it takes a long time to dry. It's so gross walking around with a sweaty glove...yuk, gross! I did try first putting my glove on then a cotton glove then finally a plastic glove and that worked but it was so bulky to chop vegs. Any ideas? Buying them already cut is to expensive cause I need to save my money for stupid ,stupid LE garments not already prepared vegetables. I love my vegs but preparing them with a gloves is awful. HELP! And grrrrrr.0
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Hugs.....I start out Cutting with my Gauntlet.....then I get Mad and just pull it off for that time....IT WORKS!!! Liz
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Sandcastle... Thx for putting the humour in this stupid LE....you made me laugh. That was the best grrrr I ever posted cause it had good results! 😀0
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One of the doctors that I work for asked me on Monday, what is that on your arm. I told him quietly...never realizing he had a hearing problem...and had to repeat myself in the presence of others...so once again, I said...I am wearing the sleeve because they removed lymph nodes when I had breast...he never gave me a chance to finish...and he left. Uh, ya think he was embarrased?
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Help! I just made a batch of iced tea in a new maker - and scalded the shit out of my left arm....it hurts. But I'm more scared then ever of LE. I haven't had a flare, I haven't needed my sleeve. What do I do for immediate treatment????
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First cold, ice or cold pack for a few minutes on a few minutes off until the heat starts dissipates, which you have more than likely started doing. Then, I would call the LEPT and the nurses at your rad/Onco's office. If it's to late to reach any of them I would go to a doc-in-the-box, get as much professional advice as possible. If you aren't able to do that I would wash carefully with Dial soap (gently dabbing) and then apply a burn cream with an Aloe base because aloe is sometimes recommended by LEPT's.
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I went to the ER. It's starting to blister. They are giving me a silvidene dressing and a topical antibiotic. I also asked for an oral antibiotic, which I got. Keflex, heavy duty stuff.
I have my Ava Anderson dream cream which is mostly aloe and calendula.
Thank you Susan Snowflake for the advice.
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Good Idea, going to the ER. Seems like they did a good job covering all of the possibilities. I hope that your pain is easing and I hope that your worries are disappearing .0 -
I thought I'd learned to turn my face -
away from me... in case -
I plant my self right in the eye -
or put things outta place
I never know why when or how -
I do what I've just done -
I whacked myself right in the mouth -
and now its fat and numb
No thanks to putting on this sleeve -
that's clingin' on to me -
I lost my grip my fingers slipped -
the rest is hist-or-y
No thanks to what I want to blame -
for being such a pain -
I know I know ... should not complain -
at LE yet again0 -
Love the poem, Musical!0 -
Thanks glennie, hope you got a smile out of it. Sorry for the terrible formatting as my poor old computer had to put up with me tweaking it hard yesterday.
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Hi all - I have LE in my radiated Breast. It feels like a water balloon and hurts a lot. I am going to LE PT for care and they gave me foam for my bra to wear inside my bra (gym style). This all started 6 weeks past RADs. I am wondering if anyone is using a pump and if it is working? What kind and price? Appreciate the help..
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Hi, bc. I also have LE in my breast and mild LE in my upper arm diagnosed a few months after radiation. I've had both a foam insert and chip packs that I put in my sleeping bra to keep fluid moving. The chip packs, little pieces of foam in a cloth like film, were very helpful but it was difficult to figure out what was thick skin caused by radiation and what was LE caused swelling. I did what the LEPT said to do. After about 4-6 weeks of wearing the chip packs (sold as washable Swell Spots) my swelling and discomfort were hardly noticeable. The foam insert was to help keep my breast from bouncing, that doesn't mean the same is true for you, LE is very individual, but I found a soft bra that did the same thing so I didn't use the foam except a few nights when I was very uncomfortable.
I haven't adjusted to the pump, I don't like it but many woman on this board couldn't get by without one. I'm going to use it if or when a flair occurs but I'm more comfortable doing MLD (massage that your LEPT will teach you) than sitting still for an hour. There are 2 brands of pumps and I suggest you look at both of them before you invest in one of them. I have a Flexitouch and my insurance covered all but 2,000.00 of it. Some insurance covers all of it but medicare doesn't cover any of it, or at least that's my understanding. If you are close to 65 you're therapist may want you to go ahead and get a pump while you're covered by insurance even if it isn't needed at this time.
This is a good place to find answers to questions from others going through what you're going through. This is good place to get info : http://www.stepup-speakout.org/
You've caught this early and that's the best thing you could have done.
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I have an friend who has had truncal lymphedema after her second mastectomy. Her first was 20 years ago. She got relief of hers with acupuncture. Anyone know anything about that? Mine is in my arm and mild but I am relentless in wearing my sleeve and gauntlet. They are HOT and a pain, but I wear them.
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I tried it for a little while,, but didn't see any progress. Maybe I didn't do it long enough? But it was getting expensive to not show any results,,,0 -
I feel like a muscle strain feeling in one of the implants, is that a LE symptom? No redness no swelling.. Just achy muscle strain feel
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B123 - Sometimes I get an achey feeling but from what I hear, implants give you the muscle strain feeling. It's weight on your chest muscles. If you also feel swollen or larger than normal, that could be a sign. Just keep an eye on it, an if in doubt get an appointment with a certified lymphedema therapist to evaluate you.
B123 - just so you know, I don't have implants but have had a breast reconstruction/reduction and just had a revision. I get that muscle strain feeling but my LE is in control. My problem places are still in my upper arms. That seems the place I carry my swell. LE Therapist says that through all I've been through, everything looks good.
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GMAFOLEY, thanks so much! Yes it feels like a muscle pull/achyness, feel it in my back behind it a bit to. I wish I did reconstruction as well, seems to be the easier cleaner version with less issues?? Maybe I'm wrong though, I don't know? It's not swelled so I was not sure if this was LE or not. Maybe I will put my chest compression strap on? Btw, I'm 3 1/2 yrs post, that's still nomal
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I'm heading to CA in a couple of days and am really nervous about flying. I live in NJ so it's a pretty long flight. My family was just in MD and it was pretty warm. I didn't have my sleeve on b/c it was just too hot. Now I'm noticing some pain in my arm. Emailed my PT, and she just said to stretch. I cannot stand wearing the sleeve all day. I mostly wear it for exercising and travel. Do you ladies wear it during warm weather? I have a gauntlet that goes way past my wrist. The PT said I can just get by with that, so that is what I do most days if I'm just home.
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ciaogina, I get pain --an intense ache, and a little burning sensation- when I've overdone, been in too much heat, etc. Please don't rule out that the pain may be signaling lymph is pooling; I worry about the advice to just stretch. If lymph is collecting, and that's what's causing your discomfort, then wearing just the gauntlet is not going to do enough to nudge the lymph up the arm and into your venous system for disposal. I know you'll wear the sleeve and gauntlet when you fly, but despite its annoyance, why not do what you can before hand to get your arm in top condition, i.e. wear the sleeve daily now until your trip? And I hope you have some other tools in your toolbox--self-massage? Night garment, or you know how to wrap and have the supplies?
I hate LE. Truly I do. It's so intrusive. I'm so sorry you're having to worry about this when you should just be enjoying the prospect of your trip.
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ciaogina: I know this will sound stupid, but if you drink plenty of water it also helps with alleviating some of the pain. I would suggest, to never wear just the sleeve or gauntlet by itself. My OT said wearing one without the other doesn't do anything to help prevent LE, that it can actually make it worse. I wear my sleeve and gauntlet 7 days a week for 14 hrs a day. I live in Texas where it is hot as hell here currently 105 degrees today. I find that when I don't wear mine I feel the swelling even more. When you are flying please make sure you wear both your sleeve and gauntlet, just my opinion.
Christy
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It...is Soooooooooo Hard to wear the Gauntlet and Sleeve for many hours a day.....my PT says when you cannot tolerate it anymore just take it off......so I wear mine about 8 hours a day....then night compression......I really do not make it all night....Liz
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For 4 years now, I've been wearing my sleeves and garment all the time. After my breast reconstruction I had trouble wearing them because of the movements needed to put them on. Now trying to get back into wearing them all again.. I am really struggling. I just don't have the emotional strength to do it. I really have no one here that will remind me or encourage me to use them (except my LE therapist on Sunday that goes to my church).. Should I wean back on to them? I have never had this much trouble being diligent.. I hate LE...... (Just had my revision 2 weeks ago - hopefully my last.... )
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It is definitely hard to wear the compression in the heat and humidity. I try to keep mine on for 12 hours, if I don't I start to feel "swollen".Gma: can you start with say, 2 hours a day? Then work your way up??
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My BS said to wear it for 2 hours but the therapist said to wear it for 6 hours. I have a very mild case, grade I. I hate wearing it.0 -
Thanks Christy. I am definitely wearing it on the plane and then for a few hours afterwards. My LE is mild, and just recently my PT said my measurements were great and actually down. I know it can fluctuate, but she told me to live my life and not feel too restricted. She is very well known and trusted in the industry in PA & NJ, so I am going by what she is telling me. I was obsessing over it for months until, I realized that even the compression is not a prevention. Thanks for your input ladies. Hoping I get to enjoy my time in Napa!
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ciaogina, who do you see? I'm in NJ and my LE PT is retiring. I don't t need her now, but am worried for if I ever do.
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I hardly ever wear mine compression sleeves and gauntlets anymore. My last visit with my MO, she mentioned that the one arm looked swollen, so I wore it a few days. Maybe it is the heat that puts me off. Maybe it's becoming stage iv and it just doesn't seem as important anymore. The MLD was a great nighttime routine. I should get back to that.
When I flew from Baltimore to Berlin, I wore the sleeve, the gauntlet, and compression knee highs. That is just generally recommended for anyone on a long flight. Also, lots of water.
Have a great trip!
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