GRRRRRRRRR I HATE LE..........
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Sad to report the Allegro Arm sleeve/gaunlet combo did not work...my thumb turned blue and cold immediately and fingers started to swell... I really liked how seemless it was and no bunching at the wrist but I guess I have to go with seperate sleeve and glove
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YIKES!
Too bad- I have had that happen to me 2 x with custom gloves !0 -
Try Www.warriorwear4u.com
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Woke up this morning - put on my sports bra - and just couldn't breathe - looked at my underarm and my bad side my underarm was bulging out. My left side is doing ok - Guess I might have to find a jovi pak pad sooner than I have money for
i will try one of my homemade pads - my breast is killing me too.. Why can't I keep it in control? Can't go back to the LE T without going back to the BS and can't afford that either 
GRRRRRRRRRRR0 -
Half to share - saw my family doctor and got a 6-month pass; saw my surgeon and got a 6-month pass; saw my oncologist and got a 3-month pass! Labs are all good (cholesterol needs some work) and all is well! Makes the LE and Aromasin side effects tolerable.
Life is good.
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Great news Ohio!
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Ohio, that's great!! What a great way to greet spring (whenever it actually decides to show up, that is)!
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Good news is fun to read. If anyone is looking for spring we've found it here today. It's simply beautiful out. I'm hoping this is a trend. Hugs to all.
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Marple, please send some spring weather to w. Michigan. It's gray and dreary today, and we still have snow.
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We got 5 inches of snow last night. GRRR
My walking partner is willing, but I'm not...
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Was so tired last night that I dozed off without getting ready for bed. I'd taken my sleeve off, but hadn't put my breast pad on. Boy what a difference. My breast is full and tight and round today, and as much as that seems like a good thing...
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Cindy, thankfully you'd taken your sleeve off but the other part............poop!!!! Gentle hugs. Tonight you can make ammends.
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Awesome, ohio! I am on 2 weeks of waiting for my MRI to be ordered ( grrrr)
Marple, it is windy here aqnd sunny but brrrrrr....sounds good!
Cindyl- gotta love that lil dog >)
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Ohio, Wonderful news.
Cindy, I would just have to take that dog out and show off that cute face. There's a good walking incentive. :P0 -
Ohio, YES! Chocolate to celebrate!
Cindyl, what a great li'l walking buddy! Really sorry about the snow, but with that eager motivator at your side you just have to smile anyway. On the other hand, it makes me really sad that we can't even JUST ONCE drop off to sleep without suiting up. Grrrrrr!
Carolyn Newman, it's entirely inappropriate for the president of Warrior Wear to come here and post an ad on our discussion boards. It's also against the board rules, so I reported your post. Knock it off.
As for weather--we don't do Spring in the desert. We've been in the 80s all week, so I'll just remind those of you who are weary of the cold that the hot is NOT nice for LE!
Be well!
Binney0 -
Binney - It was 53 yesterday and snowing/freezing rain/sleet today. Most everyone is complaining but not me. I'm saying bring it as long as possible.
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RE: warriorwear
I just want to go on record and say that I would never even TRY one of the garments for the simple disrespect shown to the rules of the board as well as the insensitivity and glaring motive for sales and profits rather than being helpful.
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I just ordered my second compression garment from Underworks. It has 30% spandex. They are both men's, appears to be mainly men's in the strong compression line. Both of the ones I've ordered are sleeveless, but I am going to try one with crew neck and short sleeves next. They also have less compressive ones. I called customer service to order my second one and they were very helpful. The first I ordered from Amazon. $29 plus shipping.
I am just so tired of the band and zipper of my compression bra showing lumps under my shirts. Maybe someone else will like these.
They also sell disposable underwear......trying to figure out what these are for!0 -
Beatmom. That underworks looks pretty good. Let us know how you will like the crew neck with short sleeves.
LOL on the disposable underwear.
Ok I will let the cat out of the bag.
When I was young and taunt I toured Europe. Someone suggested to try the disposable undies. A pack of 7 was only about the 2 inches by 6 and took up no room at all in my backpak. Ok... they were baggy at the butt and ugly as sin but probably this was a good thing as they helped keep my virginity. There was no way on earth I was going to show off those in a hundred years! The best part was ,I could spend more time partying rather than washing undies.. Yah..I got my prioritys right back then but now I want my real undies and I quit partying. Hum.. Maybe I should rethink all this.0 -
Hugz: one of my friends took old holey underwear on her cruise planning on throwing away daily. Unfortunately, the room steward dug them out and put on the counter!
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beatmon, oh that is to funny..........he deserves a tip
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I'm so with you. What makes me so angry is that in all the time in treatment not one doctor or nurse ever mentioned the word lymph edema. WTF was that all about. I'd lost so much weight during chemo and radiation and now can't wear any of the clothes. I had to go to a funeral two weeks ago and it was snowing and I couldn't get a coat on. I justo read about pneumatic compression machines. I don't have health insurance as I have a pre-existing condition. Have you heard of these? Thanks. Jody.
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When my SO and I were discussing my bmx, he said something about removing nodes. I remember asking if that would set me up for LE. He waved his hand dismissively and said we have PT for that.
I woke up from surgery with a swollen arm.0 -
Never a word was mentioned to me either.
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Jody, how incredibly frustrating, and everyone here understands exactly how you feel.
Compression pumps have a place in LE therapy, but unfortunately, they're not a good stand-alone solution. It's important to use some portions of manual lymph drainage (MLD) to clear lymphatic pathways before turning on the pump, so that as the pump moves the lymph away from your arm, it has someplace to go.
Dr. Joseph Feldman, who specializes in LE and who is the chairman of the board of trustees of LANA (group that certifies lymphedema therapists) gave a presentation about pumps at a conference I attended last summer. He said that when pumps were new, quite some time ago actually, he and everyone else was prescribing them very often, and very early in a patient's treatment. After years of experience and working with patients, he now believes that pumps are best suited for patients who do not respond to manual treatment or who cannot do MLD on themselves, such as someone who has LE in both arms.
The pump makers have a different opinion, of course, and I think that sometimes (bizarrely) insurance gives better coverage to pumps than to in-clinic therapy, which is so unfortunate. But it may explain why some LE clinics seem to jump at the chance of getting pumps into our houses...which Dr. Feldman says eventually end up in the backs of our closets, because they're often tedious to set up and use.
Having said all of that, I do know that some women in our forum use pumps quite successfully and are very happy that they have them! But I think it's not been their sole solution, rather it's part of an overall treatment and control strategy. Hopefully a few of those voices will chime in to tell you their experiences.
Have you had a proper evaluation by a qualified LE therapist? That's the first step, and here's a resource to help you find one: http://stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
The insurance problem is agonizing, and I hope some others with some ideas on working through that problem will give you some thoughts here. I think that some ladies have had some success working out a lower self-pay rate with a therapist, and it's always the therapist's goal to teach you self-care, including using LE bandages and performing MLD, so you can begin working on your arm reduction yourself and know how to keep your arm from rebounding, and to manage the swelling back down if it does.
You'll find friends here. When Estepp started this thread, her frustration about the 'fat arm' rang true to so many people, and this thread has been going strong for more than two years. LE is THAT frustrating and it's THAT upsetting, and it's THAT unfair! Just venting does a body good!
I know you'll get more suggestions here. Hang in there, and please explore the stepup-speakout website if you haven't discovered it already, because it's been a lifesaver for lots and lots of us, and you can learn a lot about the LE beast on those pages.
hugs and chocolate--
Carol
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By the way, I asked about LE risk when node removal was discussed, and my concern was dismissed, too. Seems to be more common to dodge the LE discussion than to talk with us about it, like grownups. Of course we'll take the option that promises a better shot at saving our lives, but to deny us information about LE risk, how to spot it, and how to take precautions to reduce the risk is simply to set aside the 'do no harm' part of that oath our physicians take. It's just not the kind of harm they can relate to, apparently.
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Jody, I am so glad you found these threads. I don't know what I would have done without the girls here to guide me along. Fire away any questions and we will answer them best to our knowledge. You may feel alone, maybe the only one in your town with lymphedema but here we are a multitude of understanding and care. We have some very good LE experts here. They are a wealth of info.
You may want to order the LEBED METHOD, Focus on Healing DVD. This is a super easy no brainer exercise that only takes about 15 minutes a day and it helps move out that nasty, nasty stagnant lymph fluid. The exercise can even be done in a chair for those that have mobility issues. This may be a good place to start if you don't have the DVD yet. I find the breath work is calming and I kind of chill out when I do the DVD because you have to perform the exercises very slow. Yet very beneficial.
Could you give us some more info on your surgery/node removal/ time that you have been bothered by LE symptoms etc.
Looks like we are in the same boat Jody. My MD laughed in my face when I mentioned LE. "OH you'll N E V E R get that!!!!!" he laughed out. GRRRRRRRRRR
I felt so small but now I feel so big and knowledgeable because I can explain LE to Neurosurgeons/ Dentists/ Docs/ curious people. Not always do I want to, but some days I don't mind. Each day is different with our feelings and frustrations with this DANG LE condition.Best thing you can do is get educated on LE and then CONQUER!
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Jody,
You should be able to get medical insurance with pre-existing condition soon.
The federal law that forces insurance companies to allow for pre existing condition goes into effect on Jan. 1, 2014.
Currently many states have law that allow for pre exiting condition within six months to help out until the 2014 fed law starts.
Here is link to info about these two laws:
www.healthcare.gov/law
I hope you can get ins soon so that you get help with your LE for better quality of life after dealing with breast cancer. Even though i currently have great insurance, this Pre existing crap has occupied my soap box along with other healthcare issues and being screwd around by insurance companies.
Warm wishes!0 -
Jody - I had to teach each of my doctors about LE - in this town the only one that has a clue is my LE therapist.. I just tell my surgeon that I need to see him and he orders it.. I am without the LE therapist at the moment - LE therapist thought I am at a point I could handle this on my own and don't need to see him.. I think I was addicted to going - its really been hard, but he is right, I know what to do - I just need to DO IT! He reminded me about step up speak out LOL - Originally, I was the one that sent him to that site - he says there are alot of great video links there.
I have been blessed with an angel that is buying me my night garment I needed. I am so excited. Got measured for it and fit into a made to order size - Phew!! so glad..
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Gma, whoever your angel is, I hope that you'll pass along thanks from all of us! It means that somewhere, there's one more person 'out there' who knows about and understands LE and the practical and financial problems that come with it. Awareness is good for us all, and your angel's awareness and compassion are the most shining examples of why.
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