GRRRRRRRRR I HATE LE..........
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Becky...........Will surely look in Walmart and Target as soon as I can.............thanks for the info...............
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i got a couple of pairs of the gloves to wash dishes from target... they are the yellow ones, but then they're edged in leopard.. i haver a pair for gardening, one for dishes, one for housework; and one in the car for when it rains.. then, neither my wrapped hand, nor my gloves get wet...
i forget who answered me about fungal infections and sleeves/gloves... thank you. LE therapist said never wear them in a pool, or wear them if they've gotten wet. thats' when there's a problem.. my GP is just so old fashioned. he's one who deosn't "believe" there's such a thing as LE... MORON seems to be the word of the day....3jays
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3 Jays--I can never do Suzy justice, but she had some line about "There's no shortage of stupid" or something better than that.
Toomuch: hope all is well.
When I had my cast, I used newspaper bags over it to take a shower: they're double lined and fit. I don't know if they're wide enough to fit over a wrap--maybe the Sunday ones.
Kira
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Cookie, I give my LE lecture to ALL my doctors EVERY time I see 'em. I can tell some of them are getting sick of it. Tough. I posted here recently that my rads onco finally got it during my last recent visit. That give me the courage to go on with the rest of them until they acknowledge it, want to know more, and stop giving me that glassy eyed look. Poo on 'em.
Duckie, don't know if you're old enough to remember the Seinfeld episode where Elaine had a neighbor with a noisy dog and had Kramer and Newman kidnap the thing. She got one or two great nights sleep before the dog found it's way back. It was hilarious only because we all have that situation sometime in our lives. So annoying. I yell out my window SHUT UP as loud as I can while my husband tries to pull me back inside.
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Oh yeah. ANOTHER FLARE. Am doing all the right things, too. GRRRRRRRR!!!
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GRRRRRRRRRRRRRRRR I HATE IT TO........We will get through this.....Tell me I can't do it and I will. lehugs jinky
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This is unrelated but I bought my first pair of designer shoes ever today.(On sale.)
I have always had bad feet and worn kind of old ladyish shoes.
I figure at least maybe people will look at my feet not my arm!
I have sort of spent the past few months hiding, and not wanting to shop since nothing looks great with an LE sleeve. While my bank account was happy, it was not doing much for my self esteem. So now I realize the sleeve is not a reason to let everything else go
Cheers!
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I finally broke down and went to the Dr. today. My Dr. was on vacation so I saw the new NP. I was with her for 45 minutes. She updated all my info for the last two years. She said my exam didn't make me that sick but I looked sick. lol So I have started a z pack and some good cough syrup. She even told my 8 year old Mommy will be napping today. You are not to wake her up unless you need something. I think I like the new NP! I have been really bad about doing my MLD the past few days and I haven't worn my sleeve either. So hard to wear the Solaris when you have temp over 100 and it's 78 in the house and you are having hot flashes one minute and chills the next.
So here is my promise...tomorrow I have to feel better and I will get back on track with my arm. Right?
Hope everybody has a great weekend.
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.I have had a lymph pocket kind of thing under my arm practically since my surgery. Lymphedema in arm started later. I try to rub the fluid out, but it doesn't seem to move that much.
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Susan, that's truncal lymphedema, and if the massage isn't helping, it's time to reassess with your LE therapist.
Here's a page on it, and check out the article at the bottom of the page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
It's very under-recognized, but should respond to treatment, and often improves over time.
Kira
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I know it is so frustrating when there is not a good LE where you live...I give you ladies a lot of credit for schlepping!
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I am glad to see this thread still helping so many.... I HATE that we have this...GRRRRRRRRRRRRRRRRRRRRRRR.. but the help... of our Sisters here......... is AMAZING !
This is how we survive this ladies........... helping each other!
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My daughter's Bat Mitzvahis this weekend. Two religious services and 3 fancy meals in 3 days. I've spent the last 2 weeks compulsing about LE contingencies. Two seating plans in case the weather is too hot/humid and I have to be inside. Can I get away without wearing a bra with this dress? What sleeve/glove combos should I use for which events? Given that my hand is acting up, maybe just a glove? Maybe Komprex under the glove? It's been humid, so how do I get my glove/sleeves dry in time for the next day? Risk sticking them in the dryer? Because of the %$#( brachial plexus neuropathy, I ripped one of my two dresses trying to get it on this evening, so I wore my Saturday dress tonight, and I am trying to mend the dress for tomorrow. It's taken me almost an hour to do would have taken me 3 minutes in the past. And I stuck myself with a needle.
Yesterday I treated myself to a professional MLD session & bandaging, so I would start the weekend off good. Other women get their nails done, we get bandaged. Kind of sad. KS1
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KS1--Mazel Tov!
Yes, we don't do the manicure/pedicure thing, we work out how to manage our LE through a joyous event.
Congratulations to both you and your daughter.
Yeah, LE does change our reality in a lousy way, but you've shown how resilient you are.
Congratulations again.
Kira
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KS1...I feel for what you are going through.
Drying garments...it's it is part dry, put it in front of an AC or maybe use a hair dryer? In the winter I sit them on the radiator.
I know how much of a loss it feels like to be dealing with freakin le during a special occasion, the loss of being able to just put on a dress and be done.
Mazel tov and I hope it's enjoyable!
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cookie............funny you would mention the drying.................i washed mine for the 1st. time.......I have 3 sets of bandages............the stocking, the foam, small 4cm bandage, 8cm bandage, and a 10cm bandage................talk about a pain in the ass.................right now the bandages are draped over my breakfast room chairs, and I'm sure they will take "ages" to dry since they are so heavy and tight weaved..................I am already going to go into a compression sleeve.........I just hve to get to the person who is going to measure me..........my board certified LE specialist can do it, but she doesn't want to take the responsibility, so she is sending me directly to the company who makes them, and they have an "expert" measurer, but it is 1 hour away......................not happy about that..............oh well........you do what you have to do ...........
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Mazel Tov KS1!
Leah
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Jo, I wrap. All day. All night. Til it goes down. It's not even all that hot or humid out. Don't get it. BUT at least it's not so much in my hand this time. GRRRRRR.
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KS1--Have a great time at the wedding.
Ducky--I wash my bandages each pm and they are always dry by morning. I hang over shower bar.
Cookie--I am waiting on a second sleeve and am traveling right now. I am always worried it will not be dry in am. I never thought of the AC drying it if necessary. Good idea.
Becky
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Jo, sometimes doctors will recommend a typical antihistamine--like claritin, benadryl, or zyrtec and add ranitidine, which is used as an acid suppressant, but is an H2--other histamine receptor site--blocker. The pepcid is a proton pump inhibitor, so it won't block histamine.
I've seen people with hives be told to take an H1 blocker (typical antihistamine) and an H2 blocker--like ranitidine/zantac, to block both histamine receptor sites.
Kira
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After reading about LE of the trunk I'm thinking that is what I have. In the marning the swelling on the BC side is down, but as the day goes along it swells quite a bit. I was wearing my old bras, but decided to go back to the sports bra which seems to be helping today. It's sad I never knew I could get this kind of LE, was only aware of it in the arm.
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I was taking all of that for weeks with an oral & topical antibiotic before my cellulitus rash cheared up. It would be awesome if that's works for some but it wasn't as successful for me.
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Kira1234--I have truncal LE. I wear a camisole that has compression over my bra. I got one called Inspiration at KMart. My therapist also kineseo tapes me from armpit to groin and across my back. I started this about three weeks ago and have not had any pain for about two weeks. I would still be swollen in the evenings on outside of my breast and side below armpit until about a week ago, but the swelling has also stopped. I have not yet tried to go without either to see if swelling returns. I will have to try it sometime. Becky
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Thanks for the info Becky. I will be heading over to kmart to see if I can find the camisole.
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i've found a useful "short cut" that works well for me. Walgreens and true fit both sell a wrap (blue) to put an ice pack on. its' the shoulder one... i had a bmx; so its easier..no boobs in the way.. i put it Lightly on the armpit, all the way 'round, and it takes the swelling down.
its' quite amuzing to get dressed; 1st, the wrap, and then a cami w/foobies in it; then, my tank top (and personal prefrerence) a lightweight jacket.
all made in a light spandex' rayon set. i own maybe 12 colors of them, and they're my "uniform " right now. the wrap works REALLY well for me. and on bad nights, i have LOOOSE ace bandages with velcro to close them... the truncal stays more in control; than my hands.. its' where the " 'dog" ears where after 1sr surgery... hope it helps.....3jays
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Input from anyone. I just got my jovipak night sleeve from my therapist. There are directions for washing it but it does not say how frequently. Does anyone out there have one they are wearing nightly? If so, how often do you wash it? Thanks. Becky
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Hi all. My daughter's Bat Mitzvah was a complete success. She did splendidly, the service was lovely, and friends and family from near and far were able to attend. The weather was not as hot or humid as predicted.
I mended the ripped dress and wore it to services, but after 3 hours, it was driving me nuts, and I switched back into a stretchy dress. It's strange but it doesn't matter how loose a dress is, if the dress isn't stretchy, it ends up hurting. My hunch is that when I sit wearing a non-stretchy dress, the fabric pulls down and puts pressure on the shoulders.
I wore a juzo sleeve, various gloves and a bra throughout the day, but by the late supper, I ditched the bra, put on a sweater and switched into my Tribute. My dress had short sleeves, so the compression garments were quite apparent, but nobody said a word about the garments.
A somewhat amusing LE-related incident. At services, I always sit in the back corner of the sanctuary so I can elevate my arm against the wall (and drink lots of water and make beelines to the bathroom). As the mom of the Bat Mitzvah child, I had to sit front and center for 3 hours. No wall, no water, no bathroom breaks. After about an hour, I rested my arm on my husband's shoulder. At the end of the service, the cantor said she liked my husband shoulder solution better than the wall solution, and someone else said it was so sweet how I had my arm around my husband during the services. I told her I preferred the wall because it was higher, but not to worry, I wasn't ditching my husband for a wall. KS1
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KS, I'm so glad everything went of so well! All wonderful memories to cherish! Hope you got lots of pictures (Tribute and all
!) Becky, I wash mine only every couple of weeks. Either when I think it's dirty or when it starts to feel a bit loose (washing it tightens it up again). I never wash it on a day when I'm especially frustrated with LE and compression, because the first couple of nights after it's washed it's tight again, which is aggravating if I'm already cranky, but a relief if I need some extra support.
How do you like it?
Be well,
Binney0 -
Thanks Binney--I just tried it on in the therapist's office today so will not be trying it out until tonight. It was sooo much easier to put on than wrapping, but I was (am) getting pretty good and fast at wrapping. If I closed my eyes it felt like wrapping to me. I will enjoy not washing bandages out every day. I was on a trip this weekend and that was a pain. Onward and upward.
KS--I am happy it was a great event for you. Three hours! A marathon for one with LE.
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If only the Bat Mitzvah was 3 hours! The festivities began Friday afternoon and ended Sunday afternoon, with the Saturday events going 13 hour straight. Bra came off and Tribute went on hour 10 This type of event is a LE nightmare ... Bras, salty food, alcohol, lots of time sitting and standing punctuated by racous, arm-swinging dancing. All things considered my arm and hand behaved itself nicely! KS1
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