GRRRRRRRRR I HATE LE..........
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KittyDog, I'm so happy for you!
'Bout time you got some of this nailed down, and I hope you can keep those stockings from creeping up your foot.
Maybe some ItStays would help? Your patience with all this is an inspiration!Sheila, what an honor to be given bras that were purchased with such love and hope, and then given with even more love and hope. Wear them in good health!
3jays, it can be a challenge to find foobs that work well with LE. I use Amoena Style 132, "weighted" Leisure Form with Comfort+. It's actually very light weight, holds its shape under compression but feels reasonably natural when others hug you, and the backing is quite comfortable. Barbara/"Erica"(of BreastFree.org fame) put me on to them. Thank you, Barbara!
Hugs all around,
Binney0 -
thanks Binney.. i'm due for ins to pay for bras and foobs, so i'll "troll" the web tomight!hope all is well........3jays0
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Binney, you are such a wonderful, helpful person. Thank you for all you do!
Kittydog, very happy for you too.
Shiela, same as everyone else, the circumstances suck, but I'm glad you're able to use the bras. Wear them in good health. I am sure that your friend's husband feels good knowing they will be put to good use and bring someone comfort.
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Thanks to all for the congrats. I should say that I had bilateral reconstruction so I really don't need to wear a bra, but wearing the bra does give me a little more shape than I have without the bra. It pushes the implants closer and lifts them up. The cup size is really a cup smaller (AA instead of A) that the same fitter put me in but they fit better than the bra (different style) I purchased 2 years ago and don't wear very often.
Sheila
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The Foob that she liked on me was the Amoena PurFit...thanks to the lovely dog ear he left. Yes the normal looking cleavage is nice looking but nothing sits properly and I had no plans of reconstruction. I think the surgeon thought I would change my mind. It was very light feeling considering I am a D to a DD. The other one I think was also an amoena maybe the individual. They were put very soft feeling and lighter than what the other fitter was trying to use.
http://www.amoena.com/us/Products/Breastforms/purfit/
I am also happy to say my new sleeve and gauntlet came today and I also got them. The gauntlet is bothering my thumb...I think I over did it yesterday with my new exercise to strengthen my hands. It just opening the hand as wide as you can but she added a rubber band twisted between the fingers. I had to show my daughter it wasn't a toy and then I showed my husband. ouch to my trigger finger thumb. My new fitter gave me a suggestion for the thumb since so many of us say it fits to tightly. When taking it off at night put a C battery in it.
Some other things I have learned that might help. For the back a towel gently pulled from the bad side to the good side. All so not sure what kind of tape you use for wrapping but the one they had us using here is no longer being made. Duct brand masking tape holds well and doesn't leave the sticky residue. Don't get the scotch brand. It holds but when you go to pull it off it tears into strips.
Unfortunately we are going to hold off on the Jovi shoulder pack vest. It is $400. We need to let some of the bills go through insurance to see what is going to be covered and who's bill has to go towards the deductible. My authorization is good through the end of March. So fingers crossed they pay quickly and it's to the hospital first! The hospital I can make payments with at least. I thanked her greatly for thinking about that today. She also said if we meet my out of pocket max this year she will fight the insurance company for me to get a pump!
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Oh and I have a question. If you wear a custom made sleeve where is the seam suppose to go?
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kitty dog: i weae custom sleeves, both from Gottfreid, and Jobst.. they are knitted on a special machine, and have no seams.. only the one that is at the top, to hold the sleeve up....3jays0
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KittyDog, I have a custom sleeve from Jobst that has a seam, which goes on the outside of your arm (from small bone in wrist). I go by where the elbow is since it has a diamond-shaped space for the elbow.
3jays, now I'm wondering why my Jobst sleeve has a seam but yours doesn't. Maybe Jobst has also manufactures in the U.S.? Mine is imported from Germany.
Leah
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KittyDog--I also have a Jobst custom like Leah's that has the elbow knit different from the rest. Mine goes on just like hers. When I put on my glove or gauntlet the seam of it matches the seam of the sleeve. Becky
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Okay mine is a Juzo and I ask because I was fitted for my first one over a year ago now and was taught that the seam goes up on the thumb side. The second custom sleeve the same thing different fitter. My new fitter and my LE PT said it was on wrong. It should go up on the pinky side of the arm. grrr and it also fit much better when she changed it. It makes me so mad all the suffering I had with the first one because the seam hit my nerve damage and the second one was so darn tight it didn't matter. The PT laid it out and said see this is the shape of your arm on this side...and she was right
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ok, so i was doubting myself, but nope, i have the gottfreid custom: no seam. i also have Juzo, again, no seam.. and the one i love; is the one from lymphedema sleeve co.. the teo sleeves rogether, you put on, like a shrug.. the arm wave is the one i have.. again... no seams.. maybe try one of those>>> 3jays0
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I have a Jobst and the seam goes along the pinky. My glove sleeve's seam is along side my thumb. It's my right arm that needs the sleeve, not sure if that matters.
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Interesting Kay. I have seams on both sides of my gloves/gauntlets! I do have the soft Jobst. It is my right arm also. Becky
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That is interesting. hmmmmm...
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I have a Juzo sleeve and glove. The sleeve has no seam but the glove has a seam along the thumb line and between the fingers. See below:
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sorry kitty; ladies.. the custom gottfreid has a seam, going down the whoke arm, worn like kitty dog said.. its the over the counter; which i wear MORE bc of the seam, thats' seamless, ans is a juzo. i got it for $$$78.00 at a pahrmacy here... sorry .....3jays0
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thanks Kay,
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I just got a bill for my Solaris tribute. It cost $1500. Thank God insurance paid 80% of it. Other than my house and car and wedding ring, it's the most expensive thing I own!
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Hmmm, yes. And ain't it just gorgeous?!
For that they should be hand-embroidered, maybe beaded or sequined, stunning and seductive. Any other woman who just bought herself an item of apparel for $1500 would be wearing it with pride and looking for those glances in her direction. So I always have to wonder: why do these things only make us feel like hiding out?! <Sigh!>
Wear it with pride, Kay! And may it keep every bit of swell away!
Binney0 -
Kay, your Solaris tribute is for your arm, right? Since you are in Phila area, too, please tell me you don't have IBX Personal Choice . . .
Unbelievable price, and, yes, they should be made of designer fabric and look amazing.
Maybe I just need a Solaris tribute for my arm with a vest attached. I'm joking, but my arm has been giving me warning signs, which is why I am going back for treatment, so I'm not being totally sarcastic. If I had had the vest, maybe this wouldn't be happening. Grrrrrr . .
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Actually I do have personal choice. Do they pay a higher price than other insurance plans?
Thanks Binney, I will wear it with pride!
Had my first exercise class in the Katie schmidts program at penn yesterday. I am very excited about it. They are doing a study to get a format together which will go out and be available in other areas of the country in LE clinics as well as gyms. There are only 4 classes, one per week, but I am supposed to do the plan on my own at home at least two other times per week with a day off in between. They do a strength test as well as measure the volume of both arms at the beginning of the program and three, six and twelve months after the program. I will be one of 120 women in the study. I feel great about being part of it.0 -
Do any of you all notice flares associated with being sick, just a little sick, like cold/cough thing? I can't figure out what else I've done.
My fitter says the Juzo comes not only in off-the-shelf and custom fitted, but in different weights of fabric. Mine is custom fit, no seam. She says there's a heavier one that does have a seam. Mine fit well but they are not lasting 6 months before they start to give up.
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Outfield - yes, I do notice flares with a cold. Also with sinus issues.
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Absolutely, Outfield. I had a big flare when I was sick the other year. Also had increased truncal swelling when I broke my foot. Systemic stress.
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I've been having slightly increased swelling lately with a UTI.
Leah
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Makes me just want to burrow in and live in a padded room, no germs allowed either! Sheesh this condition is positively crazy.
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Thanks all. I still get a little panicky about it, even though overall I'm doing very well.
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hello, I have been diagnosed with mild/moderate LE in my arm. I have a few questions. Do most people start out wrapped with compression bandages? How long do you wait to be fitted for sleeve and glove. I have only been wrapped for a few days and it makes me crazy!
thanks, Jean
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Kay, I wondered if you have personal choice, because I have personal choice and they have denied approval for my Solaris vest. I wonder if it's because it's trunk vs arm. Maybe they'd approve my vest if there's a sleeve attached?!! My husband's plan is supposed to be great, so I am surprised to be having such problems. So glad you got your night sleeve!
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Jean, welcome! I'm really sorry about the LE diagnosis
, but glad you found us. LE wrapping sure is crazy-making, especially those first few days. Starting out with wrapping, though is the best and fastest way to get your swelling down. That usually takes around two weeks, though it can be a bit longer. Be sure your therapist teaches you to do it yourself, and to learn the self-Manual Lymph Drainage massage as well. Those are tools you'll want to have to care for yourself moving forward.Have you checked out the StepUp-SpeakOut.org site? The "How You Can Cope" page has tips for getting through the day with a wrapped arm, as well as coping emotionally and socially with this stupid side effect.
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htmHang in there, Jean -- it gets better, honest!
Tell us how we can help.Gentle hugs,
Binney0
