GRRRRRRRRR I HATE LE..........
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Happy Birthday Kay.
It is always the LE side which gets whacked isn't it. Mosquitoes always know which side too
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Happy Birthday Kay!
And Leah. I'm also a Jan. 8 baby. Did you know Elvis Presley was also?
Leah
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Happy Birthday Kay...Jan BD here too in two weeks. 21 now if I wasonly 21 or double that, it would be grand.
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Thank you for the birthday wishes! Happy Birthday to you too Leah! Yes, I did know Elvis shared our birthday, so does my twin sister. Have a great day Leah.
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Hi girls (Hi Kay from March chemo lounge!)
Don't know if this is the place, but I want/need to get a lymphedema medic alert bracelet and don't want a plain one. I would prefer a gold-tone or mixed gold/silver if possible.
Do you all wear one? Where did you order? I did a search but can't tell if they are legit or trustworthy. Any recommendations for something (ha) cute/stylish?!!
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You can find all kinds of 'cute' medical ID bracelets online...here is where I got mine http://www.creativemedicalid.com/new_trends?b=1
They only problem with fashion and Medical ID bracelets is they can be over looked in a medical emergency and I had to remove mine for all my surgeries so I wore some old sleeves and wrote on them NO IV or BP.
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Kitty-Glad to hear you are finally getting some help.
Kay--Happy Birthday!! My sister and brother-in-law just moved to Philadelphia--from Orlando. Not happy campers yet. I have not been up there in yrs so will have to visit them this summer. Put extra chocolate chips in those brownies!!
Becky
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HAPPY, HAPPY BIRTHDAY, Leah and Kay!
Wishing you both your best year ever!
Binney0 -
Husker, a lot of us don't put the word "lymphedma" on our alert jewelry because doctors and nurses tend to dismiss it as unimportant. Just put the instructions on it and they're more likely to heed it because there are other medical conditions that restrict the use of the arm too, and they'll take that seriously. Mine's a necklace because I'm bilateral, and it just says:
NO NEEDLES - NO BP
EITHER ARMAnd I agree with Michelle that if it doesn't look like a medical ID it will likely go un-noticed. On the other hand, aside from emergencies, when I only had a single mastectomy I did wear a bracelet to remind ME not to offer the wrong arm for bp or sticks. It's easy to forget.
Be well!
Binney0 -
Oh, Happy, happy birthday to you too Leah!!!! Becky
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Happy Birthday Leah and Kelly. My hubby always brags that his birthday is 8 days after Elvis' birthday.
I have a medic alert necklace but I don't wear it except when I am traveling, I didn't get a fashionable one and it doesn't look professional with my dress clothes. My husband is a trucker and he got his medic alert (for diabetis and drug allergies) in a dog tag shape and wears it on his dog tags. It saved his life when his blood sugar bottomed out in an empty trailer drop lot and he wasn't found for an hour and a half. The guy who found him and called 911 asked if he was diabetic and Donald couldn't talk but pulled the chain out from his shirt and the medics knew how to treat him immediately. We got ours from American Medical ID tags.
Sheila
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Hello Ladies! During my UMX they removed 23 nodes 7 months ago. My upper arm has been numb since then. I also have a TE. My arm is not swelling, but sometimes I feel the tightness and heaviness. I need to exercise and my PT recommended doing some aquarobics. My problem is that she keeps telling me that I should not do too many repetitions with my left arm and I have to wear my sleeve all the time. Okay, I can't wear the sleeve in the pool and aquarobics require a lot of arm movement. I am really confused... Have any of you has done aquarobics? Any advice?
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Belated Birthday wishes to Leah and Kay! Hope you guys both enjoyed your day. Kay, how was the second batch of brownies?
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Thanks for the birthday wishes! brownies were delish!
Sorry Ralston, I don't know what to tell you.
I have a Jobst glove that I just got 3 weeks ago. I am so frustrated with it. Now the area between my fingers and thumb hurts. It is pretty red when I take the glove off, but is better the next morning. I am seeing my PT on Thursday, so I'll see what he says. Hopefully he'll have a solution. Grrrrrrrrr!
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I was told the water acted like compression so the sleeve wasn't necessary. I don't know if that is true maybe somebody else will chime in.
So my numbers are back and I actually had a 77% reduction in my calf!! She wrapped me really tight today and I can't take it off. I get measured for my compression knee high tomorrow! She gave me a good work out today because I have been to the potty more times than I care to say. lol That's a good thing though. Tomorrow she is also going to take me down and have me ride a bike. The leg exercises are going ok. My legs hurt but I am doing them once a day. I will move to twice a day when it doesn't hurt. lol
Found out to day that my oldest brother has colon cancer....so you can guess what my Dr. will be ordering soon when I tell him in March. He starts chemo tomorrow.
Brownies anybody.
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Ralston,
Do they have aquarobics at your PT site? I wouldn't just go to the YMCA class; I would go where they have someone trained in water therapy, if possible.
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hi ladies, tommorrow i go to the new fitter (again) im really irked, she didn't get the right measurements the 1st time for my sleeves, but am VERY grateful to Gottfreid.. they insisted she measure much more in the arm than she did..
the 1st phone call pissed me off. said i need 15-20; and had me down for OTC , gottfreid din;t offer them in that compression.. i called back, and said, if they can with the gloves, they can with the sleeves, she called them back.. of course, they can!!!im sticking with her, bc she's pleasant, and easier to work with, than the last one... but, really, do we always have to do THEIR job for them??? if it weren't for you guys, i wouldn't even know!!!!
but, the frustration i have the most, is gottfried won't communicate directly with "the patient" only the fitter.....grrr.. but, its all set; and i have YOU GUYS to thank for the info on how to handle the problem!!!!so thanks again.....3jays
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Are Jobst and Gottfried made bu the same company? I think they must be because the same woman called me about the Jobst sleeve and glove I just got and the Gottfried sleeve and glove that I had earlier.
Good newson the calf Kitty! Very sorry to hear about your brother. (((((hugs))))) and of course brownies.0 -
You should contact Dr. Joshua Levine in NYC. He and Dr. Corrine Becker have been doing lymph node transfers on lymphedema patients, with great success. They were even showcased in the NYT for doing this surgery. I can't even tell you how much improvement this surgery has given me.
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Kay, different company. Could it be the supplier you've been talking to rather than the company itself?
3Jays, good luck today -- looking forward to your report. It rots that this is so hard!
Ralston, hello! Is your PT a well-trained lymphedema therapist? LE is a specialty, and it can be hard to find someone who has the training, experience and skill to deal with this condition. Also, you mention a sleeve but not a glove or gauntlet. If you're using a sleeve you also need some kind of hand protection to make sure no new swelling ends up in your hand (where it's harder to deal with). As others have already noted, we don't generally need compression garments in the water because of the natural compression of the water and the movement of the water over our skin.
Exercise is a good thing for LE, but it needs to be slowly progressive. No pain or strain. Slow, gradual, consistent. Water activities are especially helpful for LE, but it's still important to be gentle with yourself. Make sure your swimsuit is a good fit, not restrictive in the axilla.
Many women here akso like gentle exercise on a rebounder -- bouncing without letting your feet leave the mat. And aside from that, we also have some real athletes here -- marathoners, bike racers -- who manage both their intense activities and their LE, so please don't be discouraged with the slow pace and steep learning curve that you're currently facing. It gets better, honest!
Gentle hugs,
Binney0 -
Thank you so much! I am changing PT because I think that is part of the problem. I am worried because I will begin rads next week and I do not want my LE to get worse. Binney: Thank you for your advise!
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I didn't realize there would be a supplier between the PT and the company, but that must be what it is. Wow there seem to be a lot of middle men in this.
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Kay, I think you have just explained why a garment that probably has $2 worth of fabric can sell to the patient for $50. I got my first-ever sleeve and gauntlet today, which fortunately (and so far!!) I need only for weight lifting and airplane travel. I am stunned at the cost of these non-custom items. I expect mark-up to cover research and development and the need to pay for all that it takes to get the items to me but sheesh....$107 for the two items. I cannot even fathom what those of you using custom items are paying. It sure does not help that we in a spankin' new insurance year, either! --Carol
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Ladies,
I love Lymphadiva sleeves, currently thinking about the Lotus Dragon Tattoo sleeve! But they do have 'Seconds' at good prices on the website:
How much are seconds?Seconds are 50% off the retail price of the garment.
Pattern, armsleeves ... $45Pattern, gauntlets ... $35Solid, armsleeves ... $35Solid, armsleeves with crystals ... $45Solid, gauntlets ... $25Natural, armsleeves ... $30Natural, gauntlets ... $20
I am only a customer, so I don't benefit in any shape or form from anyone buying them - but if you need a cheap sleeve or gauntlet....
Ali
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Hey ladies, So many of us read and post here that it's a good place to catch attention. If you are not watching the 'new kind of LE garment' thread, take a minute to read recent posts. We are sending emails to Under Armour to ask them to consider making a compression shirt version that meets our needs better than the standard products (asking in a very nice way). You'll see the link that gets you onto their email form,as well as what some of us have sent already, and perhaps you'd like to add a 'me too' email to the effort. --Carol
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And you don't have to have truncal LE to write to them either -- you don't even have to have LE at all. Plenty of bc veterans use the long-sleeve UnderArmor to reduce their risk when flying or exercising, so having a design that lets us wear the product right-side-in without the seams bugging us would be a real plus. Please do join in and call their attention to us lymphers.
Thanks!
Binney0 -
Infamoso, I just now noticed your post and sent you a private message.
Binney0 -
Hi Ladies, Happy Birthdays to all of the birthday girls!
I'm really struggling. I am still waiting on my flexi-touch to arrive. The physician prescribed it on Nov. 7!!!!!!!!!!!!!!! Paperwork screw ups! I am so disappointed and disheartened about it all. I'm so down that I spend hours a day crying. There are some wonderful parts of my life and I try to stay focused on them but because of my constant discomfort, I end up grieving about the good parts too. I just don't know how to make peace with this ever changing, never changing state of pain. I am so sad that there are so many of us! Mt PT said before the holidays, let's get together after the holidays, after you get the machine and see where we should go from there! My LE is now bilateral in the chest/back areas and I am finding it pretty hard to lay down. My DP did a MLD massage last night and I got some relief to get to sleep. My arms can't do MLD without becoming so fatigued. I have been trying to do the exercises but so far I haven't felt relief from doing them. Thank you ladies for being there. I feel pretty damn isolated.
I have been having problems with an area on my abdomen since my oopherectomy in July. We thought maybe it was a hernia but the scan says no. Is it possible to develop LE in a spot on the abdomen? I did ask one of my Dr.'s and he said it would be very unlikely. No one seems to have any idea of what it could be. It is a really tender spot that hurts when I bend over, sit up, or anything touches it. Anything- clothes, seat belt, hugging someone, ugh!0 -
Christine, can you see your PT sooner? It sounds like the flexitouch may take a while, and you're suffering.
That really stinks about the abdominal pain--perhaps it's a nerve area that's inflammed.
It sounds like you could really use a break.
Kira
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Slightly cheaper, and first quality, are the Juzo sleeves and gauntlets from Bright Life Direct. They offer nice colors, but not patterns, and I have found the quality to be nicer than my Lymphedivas. The Juzos seem to be taking the daily wear and tear better.
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