GRRRRRRRRR I HATE LE..........
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I was so set back mentally by lymphedema. I am in the middle of chemo with lots of other symptoms and this one really got to me. With a good therapist who is doing complete decongestive therapy I am better. My husband learned to massage my lymph nodes. I recommend this highly becauseit works and feels good and we both like it. I am happy that somehow God works out all things for good because this has helped me turn things over to Jesus.. I helped another breast cancer patient today by talking to her about this. I hope I can help more. Question....anybody know about the al the different color sleeves, sleeves with tatoos. Any Christians out there
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Face it.............LE sucks, and so does the crap you have to wear to control it.................all the measuring, fitting , waiting , and even the second time it doesn't feel right....................ready to give up........
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Ducky if this goes on much longer, would your insurance let you come to NYC and go to Falk?
Quiche, my I will tell you the short version of my story. Since wrapping didn't work for me, I just got custom sleeves and did mld a lot. It had worked, even my MD was surprised at my measurments going down.
I was on the border of mild and moderate LE, I realize this is not a plan for everyone.
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My measurements are not that big..........I am mild...............I went from 12 to 4 almost overnight wrapping.................since I wore the sleeve today (custom made)..................my hand has swolllen and still isn't down all the way...................if someone orders a sleeve, and glove, both custom.........why the hell would you send just the sleeve.................obviously, if the glove was ordered.........it was a must.......so why send just the sleeve.............assholes.............like I said "I'm ready to say enough already, and just let it go........................really disheartening...........playing with this order since July 6 th..............not sure who is at fault..........oh well I have Irene to worry about now.................screw the sleeve
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Webbkb, welcome! I'm sorry for the reason you're joining us, but glad you found us.
How great that you've landed in the capable hands of a good therapist!
I hear you on the set-back that a diagnosis of lymphedema can create. Even though I've been dealing with this a long time, it can still creep up on me sometimes and give me a nasty jolt.If you're looking for colored and patterned compression garments, there are several companies you can consider. Check out StepUp-SpeakOut.org for information about garment types and fit. Colored sleeves are made by Barton-Carey, Bio-Concepts, Gottfried, and a few by Juzo. Lymphedivas specializes in all sorts of great patterns, but they're not custom fitted, just off-the-shelf, and they offer gauntlets to match but not gloves; their tattoo pattern is here:
http://store.lymphedivas.com/store/pc/viewPrd.asp?idproduct=3129&idcategory=29
All these companies are listed and linked on the StepUp-SpeakOut garment pages.Good for you for speaking up about lymphedema to other bc Sisters! Awareness is a continuing problem, but we can all make a difference!
Be well!
Binney0 -
Oh no Ducky--I was hoping for a success story this go around for you. Why did the glove not come too? Mine were sent to my therapist in one package. Because of the loose skin in my upper arm I had a very hard time at first getting my sleeve on. I was sure it was too small. My therapist made me do it about three times with her before I soloed. It took me about 40 minutes at first to get on and I was very frustrated. Most of the time was trying to reach around and get the back up around my flab. I needed to be a contortionist and I am becoming one. I can get it on fairly quickly now. I do not have swelling in my hands but do wear my glove or gauntlet faithfully and I don't want it to happen. My therapist also gave me an Alps lotion to help it slide on better. Bandages Plus sells it. Keep at it. You will get there. I do so hope all of your property does not sustain damage. A vodka toast to you!
I have responded so well to wrapping and sleeve that I cannot help those of you who do not. It is so discouraging to determine what works and what does not. Of course I am new to all of this and who knows what the future will bring.
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Binney, Cookiegal, Jo-5 and Kira: Thank you soooo much for sharing your experiences and info. I've compiled it all to send to my therapist. It's good to know this isn't all that uncommon and there are still solutions to be sought. I know my therapist is willing to work together to figure it out.
Webbkb: Sounds like you've already won half the battle by getting a good therapist and a helping hand from your husband. My husband (god love 'em) stinks at MLD. He's more technical than touchy/feeling. I think he will take well to the bandaging though. It's similar to duct taping and he will feel like he's actuall fixing something :-)
Ducky: After reading your posts I felt like I needed to reach for the vodka! I've never had that much difficulty with my sleeves and it is assinine that they didn't send the sleeve and glove together or at least a WARNING about waiting for both to arrive. Good luck.
I hope everyone is weathering the storm OK.
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Hi ladies - I hope you are all safe from the hurricane!!! I just wanted to make a report, I had my port removed yesterday and I wore my sleeve/gauntlet to the hospital. They let me keep my sleeve on the whole time and put a wrist band on that was bright pink and said 'ALERT No Blood Test, Blood Pressure No I.V. or Injections into this Arm!". I thought they were very up to date. Thanks for all your advice!!0
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Ducky, that all sucks no wonder you need a drink. Hope things improve for you- have you tried a few days sleeveless, just really up the massage instead, woudl that work?
Welcome Webb and thanks for your imput. None of us likes to be in this position, but being knowledgeable about LE ( I never heard of it till it developed in my arm) and able to pass that info on where it's needed, is a real opportunity to serve and help those coming behind. Even at a simple level like, the more of us who wear sleeves in public, the less unusual they are and the less they will get stared at, and knowing that a sleeve-wearer may need help with lifting but may be reluctant to ask.
To my friends out East (but far West from here!) you are in my prayers. "Some bitch named Irere" LOL!
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I think the massage drainage is the key. If you don't activate the other lymphatic areas the lymph in your arm has no place to go. Ive been doing the self massage twice a day. Hitting the non affected areas first then sweeping the lymph over. The sleeves are just a tool. Retraining your lymph flow is the big part
Thanks for the suppot and ideas. We can figure this out and stay on top of it0 -
We are prepared for the worst and hoping for the best here in the Philadelphia suburbs. Kira, when I packed an emergency bag yesterday just in case, you can bet I included all of my LE supplies, antibiotic, bandaids and neosporin along with clothes and makeup. Funny, because I actually did those first. I was also trying to anticipate the temp since we will probably lose power. It's a given with all the trees in our neighborhood. Hope you are riding out this storm safely.
Ducky, I hope you're also safe. I swear this storm has triggered some swelling, as yesterday I felt great, and this morning my side is misbehaving. So sorry about your funky a$$ sleeve with missing glove!
Thinking of my fellow east coast gals. Be well. I will check back in when I can.0 -
So many new ladies here...:( I am so glad you came here to get help... LE DOES SUCK and so many of us deal with this ..........grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
I AM SO SORRY for you ladies dealing with IRENE... yes, the bitch! I hate to think of anyone loosing their homes... I am really sorry. Check in when you can!
Laura
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Just felt like saying GRRRRRRRRRRRRRRRRRRRRRRRRRR. I haven't even been officially diagnosed with LE but it is getting on my nerves! All I did yesterday was fold clothes and today my hand/arm is all swollen and hurts. I spent most of the day laying down as sitting up made it hurt worse and also made my fingers all tingly. UGH!!
Sorry but I knew I could vent here. Seems like I can't even do the simplest of household chores without getting issues. I have 3 kids, almost 8, 6 and 4. I can't just lay around all the time, nor do I want to. There are so many things I want to do and just can't do them.
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((Kerri))
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Thanks Ladies...........I have calmed down some, and I have the best therapist, and fitter...I swear it is the idiots making the damn thing...............well they will do it till they get it right..........they are messing with the wrong gal now............I have an appt. with my therapist tomorrow, but I have to go to the shore to see if I still have a house.................Hopefully I get back in time for the appt...........we're leaving early enough....just depends on what I find....................ok, I gotta go get the Vodka again...........just thinking about it makes me need a drink..................hahahaha
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i, too, had a very difficult time, till i spoke with Binney. im one of the sisters that almost ANY compression swells my hands. we've fought with the ins. co.until now, they pay custom for off the rack, but its' "customizes" to have it a little more closed over the fingertips, and i s longer..to cover the fat stuff at the end of the glove.
i never DID get the one i lost at the onco's office. it fit perfect for everyday!!! i'll have to start all over with jobst again... oh well, i'll have to do this every year' so i might as well get it done, i'll get more experience....... glad everyone is cking in after Irene........3jays
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Omaz, what an encouraging report about your hospital!
It's a relief to be in good, caring hands and not have to fight for protection. Whew!Ducky, truly hoping your shore home is safe. Or if that's not real realistic, at least easily fixed.
Kira's okay, but her new home took a beating -- she's already got arrangements made to re-roof the sections where the shingles went sailing off and the ceiling leaked. Very scary stuff, but she and her DH are safe.
Kerrie, I'm so sorry you're joining our "swell" sorority!
It's a steep learning curve, but all I can say is, once you have the skills and "tools" to control it, it gets lots better. You can do this! Tell us how we can help.Hugs,
Binney0 -
Kerri, do you have a lymphedema therapist yet? It will get better, I can do laundry with the best of them....
We took a major beating from Irene: lost roof shingles, fence blew down, sea wall stones, etc. We took the worse beating of the neighborhood, and it was really scary--there were recorded 85 mph winds, and they're not fun coming off the water to tear up my house and yard.
Well, roofer is putting the tarp up today, and at least I have power. And last night, it was eery, as there were no lights on all over the state and usually it lights up at night.
The barometric pressure got to me, but no lasting problems, so far.
Kira
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Kira, glad you're okay - I was wondering how you weathered Ms. Irene.
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Kira--Sorry about the damage but glad you all are okay. Listening to the news as it moved up the coast was not fun as I had some family in her path...
I wonder how ducky's shore house fared?
Any others out there have major damage? You may not be weighing in if you don't have power!
Becky
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Kira,
Glad you are all right, and I hope the house repairs happen quickly.
Dawn
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I have a question for those who have a juxta fit arm sleeve or any other input. I have lost 20 lbs since I got my first Jobst sleeve and have lost a lot in my upper arm, so much so that it feels as if there is no compression. It has me worried. My second sleeve still fits fairly well but is becoming less so. My therapist is measuring me next week for a new sleeve. I still plan on losing more weight (hopefully despite Tamox) and I can tell this is going to be a problem. I have only had the first sleeve for two months and my insurance will only replace every four. If I have to I will pay out of pocket. Since the juxta fit seems to be one you adjust would it work for awhile longer than an elastic sleeve? I wear a jovipak at night and bandage over it on the upper arm so it should go longer. So far I have not had any increase in swelling but it does worry me as I am increasing the exercise. Thanks for any suggestions. Becky
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Becky, I'd file with your insurance. Weight loss (or gain) creates a medical necessity for new garments. If you have a doctor who can write a letter to that effect, and if you make it an expedited appeal you might be able to get it approved.
The JuxtaFit is certainly more adjustable than the usual compression sleeves. It's also bulkier, and it takes some thought when you put it on because you have to adjust it like you would bandages -- more compression toward the hand, less toward the shoulder. I find it somewhat less comfortable, but not badly so, and it's easy to adjust in the afternoon if I swell more. I mainly use mine for flares (for really bad flares I still wrap though). I haven't had mine long enough to say how long it lasts. Maybe someone else who uses it more will be along with suggestions. Cookie, how's yours?
As an interim measure for a weight-loss plan, I'd say it'd be a good idea. Make sure your fitter knows what you're planning when she measures you, though, as I suspect she can help you plan for that.
And HEY! BRAVA! on the fantastic weight loss!!!
Onward!
Binney0 -
Checking in quick because I've been worried about how our East Coast friends are doing. Kira, been thinking of you. Sorry for the damage.
I've been so down with this last LE flair it has taken awhile to even complain about it. Must be feeling better because tonight I'm just ready to throw LE down a deep dark hole forever. If only.
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Thanks ladies.
I am still waiting to hear from the LE clinic and get a therapist and all so just waiting. Kira glad all are ok despite the damage. Of 10-15 trees we only lost 1 and it was no where near our house or any of our neighbors!!
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I got home today, all bummed about the storm, and it was calm and beautiful, and the previous owner had a hot tub and the cover took off like it was going to land on the wicked witch of the west, despite tie downs, and literally flew over roof tops, so my DH was working on the tub and my dog was biting the water, and the swans were drifting by, and I thought "What a difference a day makes", the day before, I thought I was re-living "A perfect storm"
It's been my DH's dream to live on the water, and I gave in, and hey, if the worst Irene did was get me a new roof, and scare the living daylights out of me as the house shook in the winds, I'll get over it.
I was talking to the husband of a patient who is really struggling with her bc progression, to the point that her LE is the least of her concerns, right before I left work, and it sure helped give me perspective.
KMMD: love to throw LE in a dark bottomless pit.
Kira
(Sold my house to a not nice person, and DH drove by and said the street and trees took a beating and they won't have power for a LONG time....Is that some kind of karma? )
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love that karma Kira.
Glad you survived Irene. All we got was some wind gust up to 40 miles an hour. We are two hours inland. I do know how horrible your house shook because we lived through Hugo with 90 mile hours winds. I thought the windows were going to blow in. Just be thankful that it was only a 1 hurricane.
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Kira, sweet lady...... so very happy you both are AOK and will just deal with a new roof and some stories to tell.... xoxoxo
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Hi Binney.......................Shore house was fine, thank heavens.............all the prayers of the sisters helped.............thanks to all of you...................I could not be happier............it is terrible to have a home so far away when there is something so drastic going to happen...............Even though it is only 2 hours.............it is a worry...................but when I'm there enjoying everything I don't even think of the price we pay for what we have......................thanks again ladies
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I am glad everyone here made it through Irene with not much damage. I was remembering when Hugo came across Charlotte in 1989 and we had strong tropical force winds go through Caldwell County, we lost power for a week but others lost power for 2 weeks.
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