GRRRRRRRRR I HATE LE..........
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Breast is all swollen this morning... not a happy camper.. LE therapist is gone until next week... I must be doing something wrong on my self-massage?? What do I do???
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Gma, the most common mistakes we make (especially if we're cranked up about swelling
) is to do the self-MLD either to hard or too fast (or both). The strokes should only move the top of the skin, not anything deep--like petting a kitten. Lymph is "slow and stupid" too, so a slow rhythm works best. Kira recently suggested using the rhythm of the song "Sunrise, Sunset" is a good one to hum in your head as you work.But there are other possible reasons for swelling too. Have you been outside in the heat, for instance? Not drinking enough water? Doing something either repetitious or stressful with your arm? Salty foods? Barometric pressure changes due to a storm coming through? A long drive?
Hang in there!
Binney0 -
Oh boy!!!! ok - the storm, not drinking enough, and typing all morning for my job?? And probably too fast...
On a good note - I know the words to "Sunrise, Sunset" - that was one of our wedding songs 37 years ago
I also have an appt with the medical supply place after work today.. to measure for my sleeve.
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Binney - Sorry about all the questions!!! I got a juzo sleeve - seems to fit fine - and being I didn't have insurance she gave me a 20% discount.
My question is: If I am wearing it for work friday without a gauntlet - is that a problem? My gaunlet had to be ordered - it is coming sometime next week. I have no swelling in my arm..all my swelling is still in the breast...being I do alot of repetitive motion at the fabric store - rolling out bolts of fabric, cutting etc...My therapist thought it would be good to wear it.. Unfortunately, My LE therapist is out of town until next week... That is why I'm asking someone here....
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Gma, I didn't know you worked in a fabric store! Lucky you!
If it were me, though, I'm afraid I'd spend half my paycheck on gorgeous fabric to add to my stash of unfinished projects.
Not a good idea to wear a sleeve without hand protection, but while you're waiting for a gauntlet you could use an isotoner therapeutic glove (some people use them for arthritis). Here's what they look like:
http://www.totes-isotoner.com/product/101751.do?CAWELAID=590785858Glad you got a discount! (Wish it had been 50% instead!
)Be well,
Binney0 -
Going tomorrow to a new place for LE..............More days and hours...........Really discouraged about things today ..............found out I hit the GAP with my insurance for Femars.....you would not believe my co pay now...........Oh well.........
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sorry ducky that is sucky...hee hee
I am actually delaying my recon because I only have 9 PT visits left this year due to LE...:( I get 25 per calander year so maybe November would be good. Got my custom juzo glove and wow it is tight but getting used to it...it is really helping to keep my hand down though so guess it is working.
Maggie
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Mags, you're amazing!
Good for you for working at getting used to it. So glad it's working so well. Nice to see your old hand back, yes?!Be well,
Binney0 -
I have a big GRRRRR. My Oncology's office did send for me to go back to the LE Clinic. I chose to go to the first place because I can add any balance there to my hospital payment plan. If I go to the other one it means a new payment plan. I already have one there from January. Anyway. My evaluation appointment isn't until July 24. Why does it take so long to get in. It's not like I live in a small town...I live in the capital of our state but we only have about six people trained to do LE therapy. So needless to say they are always booked. It will be August before I get any treatment. I may have it down by then on my own. lol I know not since it has gradually swollen back up since my hand surgery in March and with this heat wave coming I can only imagine how much more swollen it will get. grrrrrr
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((((Kittydog))))
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By golly I am a lucky girl tonight. I fell and tore a big gash in my elbow. Thank GOD it is my left elbow. I don't think anything is broken and my LE side did not get injured. Somebody upstairs was looking out for me!
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Ducky - I'm in your pocket and am praying you get things resolved at this clinic! *HUGS*
KittyDog - So sorry to hear about the LE therapy appt is so far away - I bounced from one clinic to the other and ended up seeing someone in town that no one seemed to know about... Glad I got him - traveling 1.5 hours one way in a hot car didn't sound like fun to me.. Can you be put on a wait list incase they can get you in earlier?
Dunesleeper - I hope there are no ill effects this morning from your fall yesterday.. Praying you are ok this morning.
Binney - that glove is the same price as my gaunlet they are ordering... I might just be super careful a little longer and wait for the gauntlet to come in next monday or tuesday... I only work one day a week at the fabric store to keep my "insurance". It really is only a way to keep me off the "lapse of insurance" problems - It only pays $1000 per year for each of us... Pays for DH's doctor visits and a few of mine .. It starts in April and it has been maxed out by june or july... oh well.. at least its a $1000 I don't have to pay..
The heat really does make you swell. I was soooooo uncomfortable yesterday :-P
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Thanks GMa..............love ya.
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They passed the Obama-Care....what does that mean for us?
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Ok I need some help please. I am new to these sleeves. Is there one that is more comfortable than the other even t hough they all compress like no tomorrow. What do you suggest ladies?
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Most of the ladies - when I asked that question came up with Juzo Soft, Juzo dreamsleeve and Allegro - I just got a juzo sleeve yesterday Model 2001 - it seems to be ok so far but can't wear it until I get my gauntlet.. Wore it around yesterday for awhile (before Binney advised me not to without gauntlet). It feels pretty tight at first but was ok - Took it off when I realized my hand was taking the brunt of it.. then saw Binney's post LOL.
Try some on but beware - some medical supply places won't let you return them if they bug you...
Edit: To add to the questions - Do you all prefer gauntlets that are attached or separate from sleeves and why?
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I have a Juzo soft. Not to sure if I like its tightness. Thanks
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Well here goes...i went to my first pt.appointment....1-she told me the lump on my other arm has nothing to do with the LE.So what the hell is this then?she diesnt know.never saw it.lucky me..but she gave me exercises and told me how to massage both arms.no sleeve or wrap.just compression bra to sleep with and sports bra daytime.#2-Binney-I dont know if you remember when i had the edema....this pt feels like you did when this happened last year that it was never edema and always LE.Soooo that little timy bug bite didnt really give me LE...i had it all along.Early stage but never the less i have it...grrrrrrrrrrrrrrr
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Lezza13- After you got your sleeve did your LE therapist see it on you? My first sleeve was incredibly tight and when I showed my LE PT she agreed it was too much compression. She personally called the fitter and asked her to change me to one with less. It was a relief to know it wasn't supposed to feel that tight! The new one is better but I'm still getting used to it.
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If you are new to sleeves there is definitely a physical/psychological adjustment period to being squeezed. A little claustrophobia. I go through it every time I get a new one: I take about 10 days -2 weeks to feel like my head will not pop off due to the pressure. I am sensitive in a vascular way apparently.Some advice for sleeves that " may not " fit right:
- start slow. I increase by 15-20 minutes at a time. This gets you used to the sleeve, stretches it a bit---and if it is a bad fit you are not lingering in it long enough to mess yourself up ...- take photos to document the fit. ( top, elbow, wrist, hand) Are your fingers blue? are you spilling out over the top like a Duncan Hines in a too small pan?Does your elbow have friction abrasions or deep red grooves?
- take photos to document your arm after you wear the sleeve for 15 minutes/30 minutes/an hour. You will be red places if you are a Pillbury dough girl like me, lily white. But red marks, deep grooves that do not dissipate after 30 minutes when the garment is removed are cause for concern.
Documentation is your weapon. Otherwise it is all verbal back and forth with fitters and garment manufacturers. Trust me on this one: I am a veteran of the poorly fitting sleeve wars. A visual image does not lie. When it does not fit, it can harm you. You can even use your insurance company to fight with you( use the power for good not evil..) if there is not cooperation by the fitter/manufacturer. My insurer was ready to fully audit the qualifications of a fitting provider if I did not get a proper fitting sleeve after more than a year of back and forth. My visual documentation made the difference, and when some tried to " pooh pooh " me------I sent the photos and people started to listen.
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Moogie, picture documentation, what a great idea! "A picture is worth a thousand words."
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moogie- Thanks for all the sleeve tips. I've definitely been experiencing the claustrophobia feelings especially being bilateral. Being warm (here in Az) seems to make it worse. The best feeling in the world is ripping those puppies off! So far I've only been able to keep them on about 4-5 hours before I start going a little crazy! 0
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Kate: I hear you loud and clear. They are rough here in the deep South as well. It did not really get to me until I went bilateral. Something I do: stimulate your fingertips. Sounds weird I know. I run cold water on them, rub something tactile, etc...rather than take the sleeve off. Sensory deprivation is strange.
Also the sleeve will stretch out a bit and become more comfortable or more usual for you soon. Your arm may also get a bit smaller from the compression. Invest in burly man garden gloves, Playtex gloves, and those cheap food prep plastic gloves. Then you can do what you need to do around the house w/o worrying about funking up your sleeve. Once you have a collection of spent sleeves you can just wear them for chores.
Even though armpit shaving is its own challenge for those of use with LE and deep pits due to reconstruction: tank tops are your friend in summer with LE. And linen shirts ( Marshalls is a good source for these money-wise) are great when hot flashy, sausaged up in LE sleeves, and needing to look professional.
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Binney: Saw your post to Gma about not wearing sleeves w/o gauntlets. I too have breast & truncal LE. MD and LANA therapists all told me to wear the sleeve for "heavy" work, but I didn't need gauntlets except to fly. Does gauntlet use depend on how extensive or invasive the active LE is? Thanks.
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Moogie- I'll try that- thank you!
MinusTwo- I have bilateral arm and truncal LE and was told the same thing by my PT. I'm glad you asked the question because I was wondering the same thing. My LE is upper arm only so not sure if that makes a difference?
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Kate33 -" I have bilateral arm and truncal LE and was told the same thing by my PT" Told to wear gauntlet or not??? I'm tired and confused...
I did notice btw Minustwo with my sleeve on and no gauntlet my hand was swelling a little bit.. I really think it is all so unique to everyone how we react to the sleeves... but I'm glad to hear everyone's input! Love you ladies - i'm off to be a 6pm wow... I'm tired
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Got my port out on Wednesday! WooHoo! But now LE is flaring up even worse than it was. I wonder if the port removal has anything to do with it? Or maybe this incredible heat wave we're having is all to blame. It is my first summer with LE so I guess it is
something I will have to adjust to. I took the temporary sleeve off that my P T gave e on Wednesday because it was really hurting. I had it for a couple of weeks and it hadn't done that before. Now my arm is looking bigger. When I get my new sleeve next week, my arm and hand are never going to be be to fit in it. I guess I will try to get the sleeve on again tomorrow. Grrrrrrrrrr... I really hate this.0 -
My LE flared when I had my port out for about 10 days Kay1963. My therapist said that I could possibly have inflamation in the side of the surgery and it should clear up. It did so I am thankful for that. Just try to keep you arm elevated whenever possible and do some extra MLD.
Maggie
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maggie: just a thought, from a gal thats "compression" sensitive.. they made it way higher for your glove, and that just doesn't work for me.. in theory, it works.. not so much in reality..
i stick to 15-20 even with my glove, which is rhe most swollen part of me. just wear it all the time, and it works for me. the higher comoression cause e pain... 3jays
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Another compression sensitive person...15-20 is too little, 20-30 is just right and 30-40 is too much and causes rebound flaring...I sound like Goldilocks!
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