GRRRRRRRRR I HATE LE..........
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Good to know Binny...TY.... my PT said... no no no heavier weights than 3 pds EVER....
I think I will try your way... going slow... and increasing weight.... over say.... two months.
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Estepp - I also lift weights - my LE therapist gave me an arm/shoulder strengthening program a couple of years ago - I started with one pound weights, and have worked back to 8 pound weights over 2 years. I take it easy, watch the arm, don't lift to the point of fatigue, and back off immediately if I notice any swelling or heaviness. Also, if I don't lift for a week or so, I drop back on weight and reps for the next couple of weeks
From what some women have written here, they are able to gradually work back to some higher weights. Other women have written that they increase for a while, then seem to hit some sort of plateau where any increase in weight or reps causes issues.
Just be careful!
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I was thinking seriously of trying a can of soup. lol I know we have one pound weights under the front room couch but I really think they would be to heavy for my bad arm. Is that bad or what. I think the longer I have LE the weaker my arm is getting and I think I need to start somewhere. It's not going to happen on it's own. lol I was so hoping that our clinic was going to follow through and find a person willing to work with us. Even my oncologist's NP said I had to many handicaps to be exercising on my own and she would recommend me to the Cancer Program that is being started up but I have her nothing yet.
As for as my LE...GRRRRRRRRRRRRRRR Not feeling good today and I haven't even had my sleeve on. I woke up nauseated ate lunch felt better but it has returned. Now wondering if I didn't pick up a bug.
On a brighter note...Yesterday made one year NED!
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Congrats to you KittyDog and hugs to you and all the GRRRRR'ers'.
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I had a grrrrrrr moment today. My choir director at my church got ticked off at me b/c I had LE therapy this afternoon and couldn't practice with him tonight....he threw a little hissy fit.
My husband said not to worry about it - he's just acting like an a$$. I know he's right, but I figure he's also sick of me being unavailable (I've had LE therapy every Weds. evening for the past 2 months) and I understand that, but I'm really tired of having LE, too. It hurt my feelings that he acted that way, but it also really ticked me off. I would love to have a normal arm,and still be able to play guitar, and do all the crap I did before bc/le. But I can't.
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Suzy, that is a grrrrr moment--a little empathy would be nice here, not irritation, and you don't need someone acting like an a$$. I think you should wrap the guy and have him wear it for a day, and then ask him why he resents that you're getting the help you need. Time for a well timed pink ribbon...Sure does add insult to injury when someone gets ticked off at our limitations....Major grrrrr
My younger daughter has always sung, and I loved hearing her concerts in high school and college, and now she's in the community chorus in her town. She just went to Switzerland/France to visit a friend who is working on the particle accelerator at CERN, and two other friends from her college acapella group went with her, and they sang in the Alps.
KittyDog--hope you feel better, and congratulations on the anniversary!
Kira
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Awe... congrats Kitty!
Natsfan.... GOOD to know... thank you !
Well.... I would let your choir director at CHURCH know that our Father forgives you!
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
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When I was seeing PTs for LE, they told me the idea was to make sure your arms and shoulders, back, etc., were nice and strong so that everyday things like carrying in groceries and stuff like that would not cause a lymphatic reaction. They gave me exercises to do with weights and bands, and told me to gradually increase. When I left the PTs and started weight training on my own, they told me to just go slow and be careful, increase reps slowly, then increase weights, then slowly increase reps, etc.
But if I understood the PTs correctly, they were saying it is safer to be strong than weak if you can, because then your everyday activities won't cause a lymphatic reaction. Hope this helps? It seems a slew of contridictions to manage!!! oiy.
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yup, Kira, thats' the DVD it really seems to help. and, for me, its not like Lebed, i do it all day long, with those breaths that i take (thank you, Binney).. i like it esp. bc its just where i need the strength, fleiblity..hands, feet, and shoulders .. Moves my truncal are right near armpit! thanks, Binney, ill letcha know how it all goes. right now, ive overdone in my garden. spring has sprung in so Fla.. the LE is ok, but my knees are another thing all together. the results are woth it, tho.. 3jays
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Springtime - What you're saying makes a lot of sense. We're all so different and we all respond differently ... so who knows if what works for one will work for another.
I'm currently working out with a trainer and I've found that after I use weights ... I swell ... but in a day, it goes down. And so the next time, we do it again ... same reaction. But over a period of 8 weeks, I'd say that overall ... the lifestyle things you mentioned, groceries, vacumming ... all of the household stuff ... I swell LESS because I've been slowly working up with the weights.
I wish we were all the same ... but what you've said makes sense to me and I've noticed a difference. Thank you for sharing your story. It gives me some hope.
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I have the LeBed Method, Focus on Healing DVD as well as the Healthy Steps Class #1 DVD and am another one that doesn't care for the chatting. It also bugs me that the verbal instructions don't always coincide with the actual movements. Listening to the same chatting over and over keeps me from wanting to even start the DVD, so sometimes I turn off the volume and then turn on my own music, watching just the video movements to keep the timing right. Left on my own without following along, I tend to hurry up the exercise instead of the way it's supposed to be done.
My wish would be for a fitness instructor to make a similar DVD, no other people, no chatting, - just verbal instructions as needed..........plain and simple.
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JO - I had cramping and pain in my axillary/trunc last night after over doing it in the kitchen.
Funny thing is I have not had to wear sleeves for almost a month and my truncial LE was way under control. I met with my LE therapist yesterday for a follow-up, she was completely impressed with both my arms and trunc and was ready to close my file, thankfully I asked her to keep it open since it had only been a month and summer hasn't hit yet. I just think it is funny after almost a month of feeling really good I would have a flare hours after seeing my LE PT... I am thinking that maybe I got a little too cocky and BAM!!!
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!
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O2BHealthy, I know!! it is so frustrating!!!!. I have found the same thing -- I feel like I cured, only to be humbled again!
Someone also told me that eating SALTY things could make LE worse. (and of course I love my salt!) HAve any of you noticed this? Salt?
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I LOVE Salt! I have not cut back at all because I don't think I want to test the theory
however I have heard others say that salt is a trigger. 0 -
YES YES YES to too much salt will make me flare. annnnnd I love Target's popcorn.
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Salt makes me swell too. As well as caffeine.
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Terri, you've already pulled out all the big guns and it still happened, huh?
GRRRRRRRRRRRR!Lebed is an exercise program -- actually the program is called "Healthy Steps" and its creator is Sherry Lebed, who's a nutty-but-smart bc verteran with LE. She has a DVD that some of us use and it works for many of us to help control the stupid LE. It's designed to stimulate the lymph system in the order, direction and pace of an MLD massage, so it supplements our regular LE self-care routine. It's here:
http://www.gohealthysteps.com/store/?productID=3Be well,
Binney0 -
Love salt...and it makes me swell too. Dang it.
Had to give you guys an update on my grrrrrrr moment from last night - my choir director emailed me and says, "I have heart disease and it's no picnic either. I hope we can be friends after this." ????? a.) I never brought up his heart issues, and b.) I wasn't the one throwing a hissy fit because somebody had pt and couldn't sing. And does this mean we are breaking up? My husband just rolled when I read him the message...I swear...does it seem the world is plumb nutted up sometimes or what????
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I supposed I should do a friggin SALT TEST!!!! Salt is the last thing I have left!!! (I have changed so many things about the way I eat). Maybe I will invest in fancy peppers!!!! LOL.
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Suzy, You should let the choir director know that if he's having angina or a heart attack, you'd understand if he wasn't up to singing!!
What is with this guy? Competative suffering?? It's not a zero sum game here, you have compassion and empathy for someone who is dealing with a CHRONIC problem and you work with her.
I'll bet he's embarrassed as hell about laying into you, but he's just digging a deeper hole, IMO.
Singing is good for LE--you take deep breaths and it's good for your spirits, but do you have to send this guy the Jobst brochure, with horrible photos to get him to understand?
I do believe you've said, "there's no cure for stupid"
Kira
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ohmy yes! i've noticed the PAIN that isn't always there, def. comes when i eat salt! popcorn was doing it for me, till i put it together. id eat popcorn at night, and swell all night, the pain in my hands was really bad!! when i quit it, it got better. i got the kind you pop yourself, and some thing for the micro; don't salt it, and its all good. im highly sensitive to salt. you may not be.. 3jays
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Kira, I never thought about singing being good for le...you are such a genius!!!!
I just deleted his email. I'm not going to get into a contest with him, for the love of pete.
And you are so right...there is no cure for stupid!
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Sounds like we should all be singing and giving up salt!!! I
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I love to sing and I also use a hot air popper to pop my popcorn and don't add any salt at all. I use the spray margarine to give it a little bit of flavor without any extra salt. When I had my basset hound Penelope, she would sit in the kitchen beside the counter and wait until a stray kernel popped out of the bowl then snatch it up off the floor. She loved popcorn as much as I do.
Sheila
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Received my LEBED video today.
Here are my thoughts: Overall, I liked it. Thank you for the heads up about the voices in the background ... I expected it to be a lot more annoying than it actually was ... had you all not alerted me, I think it would have bugged me, but since I was expecting it ... it was better than anticipated!
I REALLY liked the first 15 minutes which is what we need it for anyway. My OT gave me exercises to do ... but none of it involved the lower portion of my body. Yes, I've been doing my exercises too fast ... I found this section VERY helpful.
An early arm section ... I'm not exactly sure which one ... it's one where you have your arms out a lot ... that one I could really feel in my shoulders. I haven't had my arms out and held them there that long since my surgeries. There is no way I could have this the first months after my surgeries. It made me realize that I have still have a ways to go, but I'm getting there.
Thank you for the heads up re this video. I won't do the whole thing every day ... but I'm going to try to do at least the first section on the lymphatic system every day. I think it is going to help me.
Thanks, ladies!
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As my hubby always says............
" it is best to remain silent and appear a fool, than to speak.... and remove all doubt..."
Of course he is rephrasing Lincoln. ... but you get the gist........
GRRRRRRRRRRRRRRR
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I haven't cut salt either, but I don't push it. I asked a question a few pages back about the tight shirts you gals sometimes wear. I think they are sport wear, but I'm not sure. Could someone who wears the shirts...(I don't even know what they are called), please tell me where you buy them and how are they sized? Thanks
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Hi, everyone, Happy Weekend. I have not been on here for awhile, but you are all my best resources for great information. I have been doing reflexology on my feet ever since being diagnosed with LE in November. I also go to my LE therapist 4 times a month now.Have any of you had experience with reflexology??? I have been told it is great for your immune system. I have it done twice a month along with my LE massages. Waste of time or good?? I so appreciate your input. I know I feel really good after these massages. Thanks so much!!!! Kathy
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kelben,
I don't wear the shirts, but the ones I've read about are called Under Armor, and they are sold at sporting goods stores. People recommend buying one size smaller than you would usually get to supply some compression, and to wear them wrong-side-out, so the seams don't bother you. I hope this is helpful. I thought I saw Binney's response to you the other day, but I couldn't find it on this thread, so maybe it was on another one. Do you remember which thread you asked on? Good luck!
Dawn
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