GRRRRRRRRR I HATE LE..........
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I am quite the little board ho tonight.
If anyone has Juxta-fit advice I would love to hear it!!! Just got mine today.
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Good luck Cookie, we are all with you in spirit!
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I have a scared confession to tell you about thanks to all the post about cellulits. I am at my moms and it is like 1am and I am doing my MLD before going to bed and I am swollen. So I decided to do some extra massaging on the back of my arms when I felt a bump. Yeah you should have seen my scared face when I looked in the mirror and saw a red pimple. I managed to get back down the stairs and made my nephew mark it with a black marker. lol I didn't wear my night sleeve and during the night it must have popped because it was crusted over. I really was so scared something was going to become of it with all the talk of keeping our LE arms safe. So far so good. I didn't wear my sleeve yesterday because it stops right were the bump is. I wore my to big one today because it come up and over it and I wanted extra protection in the mosquito heaven this area is.
I have an oncology appointment tomorrow. Yeah he gets to see how swollen I am all over. Hope all are doing well that live in the heat. May you cool place people have a non swell day. I passed the chocolate today. SO have a brownie.
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Hi, Cookie and Donsuzbee:
I wrap my arm at night or wear my Solaris oven mitt. During the day I use the kinesio tape on my le arm and side. I went to my LE therapist for months learning how to tape myself, and have a basic mastery of the tape - I cannot do the more intricate taping that she can, but I'm adequate with it. I don't wear compression garments - they seem to make my LE worse for some reason. One or two days a week I will wear my bandages during the day for about 6-8 hours. I also use the flexi-touch machine at night and do mini-MLD twice a day.
Kinesio tape is an amazing tool in dealing with LE, but it's not something you can just read about in a book and do - you have to get training from a le therapist who is certified in applying it, imo. It's some powerful stuff and can cause all kinds of problems in my le arm if I don't apply it correctly.
Feel free to pm me if you want more info. I love the stuff, but there's a learning curve to it, no doubt!
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Here's some kineseo taping information:
http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm
Be well,
Binney0 -
I tried it once or twice, but when I would put the sleeve on it would peel off. It seemed to do a little good on my lower, but not so much on my upper.
Though the "pink octopus" was kind of funny!
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Kitty, how are you doing today?
Kira
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does anyone ever get swelling in their leg...I could have sworn last night my upper leg looked really swollen, but maybe my mind is playing tricks on me.
Have a great day all!!
I should add...arm looks pretty good this morning so far. New sleeve came at just the right time. I will probably just wear it on the way to and from the event. I am still actually wearing it about 90 minutes with a break since it is new.
Out into the heat!!!
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Good luck Cookie! Are you on any meds? Somewhere on the tamoxifen thread people talk about leg swelling. I am on tamox and sometimes I feel that both of my legs are bigger. Becky
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Just went to a doctors appointment wearing a little black dress and my big black sleeve and glove. It's to hot to wear a cover-up.
Since it's NYC, and there are people wearing odd things, nobody seemed to make too much of it.
I am so happy these garments finally made it. It's helping a lot!
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Binney4 - thank you for the referral to the Stepout Speakup site about Kinesio taping. The picture shown on the site is exactly how the therapist did my back several years ago. I have not used the Kinesio tape in awhile, but do have some, so going to try it again.
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Cookie, I don't have any advice on leg swelling, but I just wanted to know you are in my thoughts. Remember, you are part of Team LE where we kick butt and take names! Usually we throw those names in the trash! YOU are one smart, tough, and beautiful Cookie, and don't let anyone make you feel less than that.
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I notice swelling sometimes on the Tamox. Most the women I've met who have had leg LE had surgery as a cause.
Cookie, I agree with Tina. We're all thinking of you today, No doubt in my mind you look gorgeous
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Cookie, hope you have a blast - I am sure you are rockin' the black garments and dress....think Kylie Minogue, honey. She's always wearing some one-armed something that looks like she has LE and she looks awesome.
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Does anyone get the Solaris newsletter? I thought this was interesting from the last one about what to do about wearing :
I know that wearing any garment at night can be a very hot experience on these hot and muggy nights. I have the cure for that!
Take your Tribute and put it in a zip lock baggie then put it in the refrigerator during the day. NOT THE FREEZER.
When you are ready to go to bed and you have completed your skin care, take the Tribute out of the frig and put it on. Oooooh, how cool and comfy it will be! Now it should be that way all night long.
The Ladies in Texas gave me that hint a couple of years ago stating that it works. They also say that women that are going through menopause with the night flashes make it more bearable for them.
Remember too that if the Tribute is getting warm due to reasons other than the hot muggy weather. Just toss it in the washer because the garment's pours may be clogged.Anyone tried putting their Tribute in the fridge? It sounds promising. Here's a link to the web version of the newsletter: http://us1.campaign-archive2.com/?u=f32ccbc68d12fdd1d9d6c6249&id=9ac67fc3f8&e=8576880ce4
On another topic, why does this next link scare me? This link advertises a 3 hour continuing education course for PT, OT and massage therapists on compression wrapping for LE patients. Three hours? And a home study DVD? That's it? No hands on learning under the watchful eyes of an actual instructor in a real classroom?
No wonder so many of us have to go through two or three therapists to find one who can actually help us! 0 -
What are my chances of developing LE in lower estrimities if I have the D.I.E.P reconstruction? Just wondering. NJ
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Nats Fan, that's why the 4 major training schools have formed an alliance to combat this: the official stance of the APTA is that no PT requires additional training to treat LE--yet Stanley Rockson did a review of PT training and they essentially receive no training in LE during typical education.
And these weekend wonder courses are just so much easier than a 10 day course and Vodder re-certification.
And even well trained therapists can cave to insurance pressures and spend more time documenting than treating.
The new version of the lymphedema bill is attempting to address basic training requirements. Until then--as someone who got two sessions with a Linda T Miller weekend grad--we have to educate and defend ourselves against these inadequate therapists.
Enough of the rant.
Norma June: I don't know, I do know one woman who got some swelling in her thigh after a TRAM flap.
RE: tamoxifen--my ankles get puffy on it, and I showed my LE therapist who got all freaky about primary LE, and it only happens with extreme heat, but I started wearing mild compression knee socks--15-20mm, and it's not an issue.
Cookie: not sure when the function is, but you'll be a beautiful, confident presence. I have colleagues who were not nice to me when I was treated, and I do hold a grudge....Like I got breast cancer to personally inconvenience them????
Kira
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NatsFan, I've been chilling my night garments in the fridge for several summers -- it's delicious to put on, and the cool does last a long time. My advice whenever I mention this, though, is not to store it anywhere near the onions. 'Nough said!
Binney0 -
Norma - One person's DIEP experience - I've had one. I don't know whether it contributed to my truncal LE or not because it wasn't diagnosed with truncal LE till 2+ years after my DIEP. However, I love the results of my DIEP and honestly forget most of the time that they are not the "original equipment". I've experienced no lower extremity swelling at this point.
Kira - glad that the professional LE people are banding together to fight these weekend wonder courses. That press release scared/PO'd me no end. Binney - LOL about how to avoide an onion-y night garment!!!
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Mary, thanks for your reply. I already have some truncal LE & arm on the bc side. I know it's always a possibility. I was just wanting to get a scar revision done. The PS recommended doing hyperbarics first, okay fine. But she wouln't see me until after 5 weeks & then blinded me by saying she couldn't do a revision but a lat flap. I was upset to say the least. I feel like I wasted 5 weeks of my time & money for nothing. When I told her that she got very definisive. My gut kept nudging me but I guess I can say I tried. NJ0
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Kira my arm is still fine. Puffy but it is hot here. I sent my DD up to cut the window unit on last night. Let's just say she now knows there is a fan mode and a AC mode. lol We go to bed very late last night.
Oh and the solars trick worked...I got the newsletter and tried it last night.
I had a good visit with my ONC. I had to go have a chest e xray. I am not going to worry over it at all. yeah right. I feel sure it is just left over problems from my cold and the fact I keep getting choked on trying to swallow my pills. My right lung feels funny. Not quite the same as when I am wheezing.
I also am going to start taking the lyrica every other day for the next week and stop it. We are thinking it might be causing my leg swelling. I am also switching to a new AI...I have to finish my script of Femara and then I get a week off before starting the new one. I so hope my hurting fingers and knees improve on the new one.
Cookie...hope you have a great time in that new black outfit.
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Kitty, I'd be interested in hearing back about whether going off of Lyrica helped the swelling. Keeping fingers crossed for you regarding the CXR
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Talked to my LE specialist today about leg swelling too................thought mine looked a little swollen.................she said "no" you will not get leg swelling with arm lymph...............she said that would only come with a problem in the lower portion of the body, not the upper as with breast surgery......................thank heavens...............she is Board Certified, so I imagine she k;nows her stuff...
Happy today my arm went down 4 % in just 4 days............she was very happy too.
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Cookiegal, how was your event? KS1
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Hi!
The good news is my husband won the award!
The bad news is he forgot to mention me in the speech.
You would think the whole cancer thing would have made him remember me but what ever.
So thank heavens I got those garments in time. They really make a huge difference. I swelled up a little bit, but it was not one for the record books. My truncal is kind of bad, but I am going to see the NYC LE tomorow.
Fashion wise the sleeve seems to look the best with a sleeveless black dress, not too girly. I almost look like I am part of the funky detached sleeve trendlet.(BTW in one of the celebrity magazines there was a one sleeve purple dress that almost looked like an le sleeve. Also in Vanity Fair there is a photo of a woman with funky detatched sleeves.)
Since they are new I am still doing 2 hours on, two hours off.
I basically just wore them on the train and took them off right before we got there. The event was only 3 hours long, and thank heavens for the storm, because they moved the cocktail hour inside. If they had had it outside in this heat I would have been sunk.
It was strange being back in that mileau. Some people never realized I left my old job. Some people were happy to see me. Some people just ignored me. All in all, it gave me a bit of closure.
I got my hair colored very very blonde today... so anyone who saw me probably noticed that not my arm or totally different bustline for that matter.
So thanks for all the support and help. I am so touched, especially by what Tina337 said. That almost brought tears to my eyes!
That's about it.
They did have very good ice cream in a chocolate shell! I wished I had stuffed some of the cookies in my purse.
I no longer drink alcohol much because it makes my arm turn red, but tonight I made an exception, and boy did I love that cocktail. The first I had in months.
Oh and my psychiatrist said today....I am impressed with how resiliant you are! That was kinda new.
Have a cookie filled night!
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Cookie--So glad it went well. Many actors accepting Oscars forget their wives and later say it was nerves. Glad hubby won award.
Ducky--Glad to hear of the reduction! Keep wrapping. It makes a difference. I cannot pass a gas station here without thinking of lottery ticket and you!
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Cookie--Congratualations on your husband's award, and I'm sure it was just nerves that kept him from acknowleding you. Isn't it funny how some people never figured out you'd left?
Whenever I think it's all about me, I remember that Far Side cartoon with a kangaroo on the street and there's this boomerang on the street, and the kanagroo thinks "Was this meant for ME?"
You are resiliant!!!
Kitty: my younger daughter moved to a hot third floor apartment, and we left her an air conditioner, still in the box. So at 10 pm she calls, wanting directions on how to install it--so we skyped her, and talked her through it, only she just put it on fan at the start and was complaining it was useless....So, dh--sort of snappy--told her to put it on cool....
Glad the arm is all better. I had to have a CXR last year when I had a bad bronchitis, and luckily my allergist ordered it, and got STAT results, and called me in half an hour. I was a wreck.
Mary: I emailed that link of the on-line LE course to Steve Norton, and hope he can do something about it.
Kira
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Cookie, happy for DH, I think sometimes we're in their thoughts so often, it doesn't occur to them to say anything. Saw a guy give a speech once and he forgot his SO's name. Looked right at her and said I especially want to thank "uh....uh...." someone in the audience finally yelled it out to him.
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Cookie, you rock! I know you are awesome with the blonde hair...bet you looked amazing.
Men are morons, bless their hearts. They can't help it - I know your DH loves you dearly and appreciates what an amazing woman he has...he probably just freaked behind the podium. I have done it before many times - it's almost like an out of body experience.
Make him buy you a present to make it up to you. I'm so glad things went well - you deserve some good/easy times for a change!
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Thanks all...I am seriously kind of shocked at how much difference wearing a sleeve that fits makes.
Part of me did not beleive a sleeve would help my upper arm ever!
I am still warming up to the juxta-fit.
My arm is usually good in the AM, but this morning is was really good.
Kind of crazy it took this many months to get a darn sleeve.
I am supposed to call on monday and place an order for my second set. Still tempted to get a Barton-Carey for breathability...but should probably just go with a second Juzo, in case something happens to this one.
Does your insurance give you new sleeves every 6 months?
Have a great day!!!!
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