GRRRRRRRRR I HATE LE..........
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Weather plays a big roll in my pain. We are on another heat wave and it stormed all day yesterday. I have pain under the arm yesterday and today I woke up with my chest hurting.
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the weather plays a big part of it...even I know that much.I feel so dum about this entire thing.same as when I was first dx.I was so dumb..this is a new ballgame and the more I play in this damn game the more I am hating it....And the less I am understanding how to handle it.
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I'm trying not to panic ladies - Maybe its because my swelling is down... but when I was doing my MLD before bed I found a pea sized lump about an inch away from the end of the scar, in my breast.. Its been a year since rads... Its got to be scar tissue - Correct???? Cancer cells shouldn't be in my radiated breast so soon???
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GMAFoley--why does this stuff happen on weekends??? Best to have your surgeon feel it, and put your mind at ease.
ARGHH
Kira
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There is a hospital in New Orleans that does lymphnode transplants. I found them on the internet. They were very nice and checked with my BlueCross Insurance to see what I have to come up with to have the surgery. Over $7,000...so as of right now I'm stuck with a left are that is significantly larger than my right...but have started saving. The name is Center for Restorative Breast Surgery Email stacy@breastcenter.com and she will be happy to help you. Good Luck!! Pat0
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get it checked gmafoley. don't take chances. damn. i'll be without internet for a while so all i can do is keep you in my prayers.
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NJ weather is like soup out there...everything hurts and nothing works.
We had a big storm last nite.slept right throu it.
I heard it was 107 in Dallas Tx.damn.
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I agree it's most likely scar tissue that has developed but you need to have it checked. My scar tissue didn't form until after a year. I had some pea size ones right after surgery but now the whole area has scar tissue with small lumps everywhere. Scares the tar out of me everytime I feel them.
And yes it was happens on the weekend.
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finding a lump is too scary! I agree get it checked. I just had 2 spots on my skin biopsied and one came back positive for cancer. So guess I am up for another scar this time on my back.
patweaver...i am seeing one of the docs in NO that does that surgery for my Diep and if the diep doesn't help the LE to get better I am going to discuss with her the VLNTx surgery. I almost do not care what it costs and am starting to save me pennies now! The success rate is really high on it too.
Been a rebel for the last couple of weeks and do not wear my night time thingy. I have also stopped wearing the sleeve everyday and have been wearing it for exercise and work. So far so good the swelling has stayed the same in the hand.
Maggie
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Went on a hike today and I look like a puffer fish. I feel like I'm walking around with chronic, low-level swelling constantly. I will get my sleeves this coming week, so hopefully it will do the trick. I need a good MLD tonight, lot of fluid to move.
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hope you get it moved nibbana.
i'm having to use the paint roller trick to do my mld these days because my good arm is in a cast. so glad i read about the paint roller trick else there would be nothing i could do. so thank you.
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Nibbana - It feels so horrible when you are swollen - hope the MLD gives you some relief!
Why when you want something checked the hours go so slowly - Been working since 4am and I still have 3 hours before the office opens
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I WISH you girls would go over the Paint Roller trick....or direct me to where it is....THANKS!! Liz
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Doc just got back from vacation and will start seeing patients tomorrow - she tried to get me a thursday appt and i started crying(really didn't mean to
)... works every time though... She is going to call me back and find a cancelation to get me in tomorrow... I really feel like I am crying "wolf" when I ask for them to check things out and it turns out to be nothing 
I was talking to a young friend yesterday at church (who was causing my boarder a little grief) , My Boarder came up to me after and asked what did he want? - I told her that he was just asking how I was and gave me a hug.. I found out from my new boarder that people at church told her I am super emotional..So she just wanted to "Protect" me from him. Oh GREAT! I never even thought people thought that about me.. I am real bummed... EMOTIONAL - They haven't Seen Emotional and Yes emotion is my fate, since BC, it seems...
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GmaFoley - We hope it IS nothing. Cannot be too careful. xo
I think this OT that my dad hooked me with ... she doesn't know what she's doing. I think she's had some LE training but she is not certified. I know more that she does. When I told her I couldn't sleep in the sleeve and glove she asked me why?
Definitely not a vote of confidence. She wrapped me but I took it off and it was worse in my hand than before. She gave me a video and wanted me to watch it and then come in tomorrow morning and have me wrap in front of her. I totally haven't watched it and don't want to. I so wanted to learn how to wrap but I don't think this lady knows what she's doing ... thinking about calling and cancelling the appt. in the morning. 0 -
Dawne-Hope I am so sorry your OT isn't working out - we only have one LE therapist in town.. I did ask him about teaching me to wrap though - he said we would talk after the granddaughter left - then said he thought, being I had a mild case and most was in my breast - a little bit in the upper arm he didn't want to Cause me that Stress.. He said if I could get my DH to come in with me to learn (fat chance), he would teach me... He went on to say, IF and/or WHEN it is needed, we would deal with it then. I understood, after watching one of the wrapping videos...
Still waiting for the call back with appt for tomorrow - maybe I will ask my LE T what he thinks about the lump when I see him this afternoon - he knows what scar tissue is ROFL... Don't worry, I will still go to my surgeon when he makes me that appt
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Dawn-Hope--the OT doesn't sound like a great resource. I'd say--watch the video and find someone else.
Did you ever see the amazing link Nitocris put up on wrapping--remember, everyone does it differently, but it's a good reference.
Here's what I do differently--I don't use artiflex--I use the soft foam roll--Rosidal soft. I don't do the basketweave--I just roll it on. So it's a reference, but not the only way to approach things.
Nitocris also found a youTube video of JoAnn Rovig wrapping, I'll see if I can find it.
Found it!
http://www.youtube.com/watch?v=OWq1kP4fvtY
I went through 5 therapists before I found my therapist. You take away the good, and avoid the bad, and cut your losses and sever the relationship if there's no trust or assistance.
ARGHHH
Kira
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Update:
Got an Appt with the surgeon at 3:30 tomorrow..
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What do you do when MLD doesn't work?
I'm blowing up here. We have couches at work so I lied down and did the full MLD sequence. Arm is still swollen.
What now?
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Drink water and elevate. Do some abdominal breathing slow in and out. Binney has told me if you do the MLD too fast or too hard, it can make things worse. Breathe.
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Nibbana- In addition to Foley's suggestions, raise you arm up straight in the air high and fist pump 25-30 times slowly. This drives the fluid down. Do this a few times a day but don't tire your arm out.
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Nibana, I see you swelled when you walked. Next time you walk don't dangle your arms down. Hold your arms like you are holding ski poles. ( or like a race walker) In fact, I sometimes use Nordic walking poles as they support my arm and keep it bent at an nice angle. Your arm may respond much better to the walk if you try this.
A lot of this sucky LE is trial and error but we eventually find answers, so stick with us.
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hugs4u,
I use trekking poles whenever I hike. Plus I had on long sleeves and a wide brim hat for protection from sun and bugs. I guess this is trial and error. If my arm doesn't like hiking, that's too bad, cause it's going hiking anyway. I'll just hike in my garments when they come.
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Nibbana. Smart girl on the poles thingy! You sound like you are doing the right things and I enjoy your " I'm gonna do what I wanna do" attitude! You remind me of Nordy, She goes biking and skiing and whatever and then doctors up her LE arm after. She has LE under control and makes sure it doesn't spoil her life! I am not brave enough to do everything I use to. A flare scares me to death. I admire you! 0
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Rockym, I owe you a review of the Allegro combined sleeve/gauntlet, which was waiting for me when I returned from vacation on Saturday. I'm very pleased with it! I bought a medium in 20-30mmHg compression.
If you want to compare it to a sleeve you are using, it is exactly 19" from sleeve top to the bottom of the gauntlet. When laid flat, the band at the top is 4.5" wide (so 9" circumference) and then flares slightly, to 5" wide, for the four inches of length below the band. The width is greater at most points than both my medium Jobst off-the-shelf sleeve and a lymphedivas sleeve, but the fabric is quite different, which may explain why I sense that the compression is similar to the other sleeves. I cannot tell the difference in compression, if there is any. I am 5'3" tall, so not very long arms, and I had read that the Allegro might be extra long, but that does not seem to be the case with the sleeve/gauntlet combo.
For the money -- $27--I'm glad I tried it, and I'll be keeping it to see how it continues to work and to hold up for me. Brightlife's return policy is so good --they take it back even if you've worn it for a while--it's a pretty low risk to order one and see what you think.
Carol
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Kira - Thank you.
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GMA there are no guarentees...but it is pretty common to have fibrotic spots by your scar
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Teka - I am going crazy this morning - I am pretty sure its nothing but the waiting to get that confirmed is soooooo hard... Really having trouble concentrating on work..
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I just wanted to tell you girls......I am so Pleased with Lymphadiva's that I ordered the sleeve today....a Beautiful Design.....I did well with the gauntlet....I am most happy....Liz
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Liz, that is awesome to hear. now that I know my size I might try ordering something but right now I am doing ok with the two I have.. Its kinda weird - the beige colored ones match my skin so well I haven't gotten any comments on what it is yet...
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