GRRRRRRRRR I HATE LE..........
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BeckySharp? No Jamaica for me. I always worry that I posted on ambien. Now Jamocha ice cream sounds good!
Niagara ...we are going to Niagara.
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Binney - thanks for checking on me - I'm doing really well, but of course, my arm is choosing to flare right now. Color me annoyed.
Jo, I sent you a response to your pm - hope it helps! I will say (because I didn't say this in my pm) that the BIGGEST help to me is wrapping. My arm is bandaged right now, btw. Nothing works as well as this - and as bad as I hate to do it, especially when it's 100 degrees outside - it really works. I also agree with kira - while a pump (as long as it's the right kind) can be a great complement to LE treatment, for me, it was extremely important for me to learn the basic tools. MLD, bandaging, learning to avoid certain triggers that cause flares, cellulitis, etc. It was a big learning curve for me and I was extremely overwhelmed the first 5--6 months of my LE diagnosis. Now, it's been about a year and a half, and I'm just like, "Whatever. Bring it on, LE." It helps a lot to have some experience, you know? I guess what I'm saying is, Hang in there, Jo. You will get a handle on this.
Dawn Hope, your friend w/the diet recs. cracked me up. I never fail to get a charge out of people's moronic ways. Of course, I have plenty of them myself!!!! I had a friend who looked at me one day after I answered her question, "What's wrong with your arm?" (
) and she said, "I never heard of that." I wanted to say, "Oh, sorry. It obviously doesn't exist then." Can we say WIENER-HEAD? Whatever.And you know, I made a commitment in my devotional time this a.m. that I was going to be kinder and gentler....uh, I think I made it 6 hours.
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Jo, I have never wrapped during the day except when I'm flaring - any other time, I wrap at night.
If I'm flaring, I'll wrap for 3-4 days straight, and let me tell you, it WORKS.
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Jo, I just wrap at night. The only time I'm wrapped during the day is for a couple of hours after an MLD treatment.
It's an essential tool in your LE toolbox, and how you decide to use it will depend on the results: it works so well for me, I keep doing it.
Suzy, personally, I'm glad you're freely expressing yourself. I needed a Suzy lift today.
Kira
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But, Jo, what you're talking about is being wrapped all day for your Therapy Intensive (initial therapy), right? You might be able to work something out about that with your therapist, but here are some considerations:
First, it's the standard of care to be wrapped 23/7 for the first couple of weeks of a Therapy Intensive. It's like chemo or rads -- you have to make room in your life for it, because it's the way to get ahead of the ball. After that, you'll only use wrapping at night or when you're traveling or flaring.
The pump -- any pump -- is no substitute for wrapping, especially not for the wrapping in initial therapy. Wrapping and MLD are not even in the same ballpark. Apples and oranges. The pump is a substitute for self-MLD. It can be better than self-MLD if you're not especially good at self-MLD (I'm not
), or it can be not as effective. Either way, it's not a substitute for either therapist MLD or for wrapping (either by the therapist or yourself). So if you're thinking a pump will eliminate the need to be wrapped, you're likely going to be disappointed.
The first time you're wrapped it feels like a straight-jacket. You think you'll never be able to bend your arm again, much less use your fingers. You drop everything you touch and knock over everything you walk by. If you're me, you might even cry and throw bandages.
BUT!! Within a couple of days you find your balance again, start to get the hang of moving your fingers and hand and elbow, and you find you can do most everything wrapped that you could do before (except stick your hand into a sink of dirty dishes
). It gets better, honest!
Keep us posted. Hugs!
Binney0 -
For all of the "rashers" out there, ask your primary care md.'s for a tube of bactroban ointment or cream. I swear by it.... any bump or cut,sting ,bite or rash. He said I should always have some with me..... I know that I have kept cellulitis from happening by using it.
Hope and pray that you all cool off soon.... (I guiltily sit in the misty woods here on my island)
Daff
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Jo, not everyone needs or has the intensive phase--I didn't. But, I still wrap nightly because it's so effective.
Normally, the therapist starts by wrapping you for a period of time to reduce the swelling and fibrosis.
Your therapist has chosen to not utilze wrapping, but instead go to a pump, which traditionally is an adjunct therapy.
Wrapping really is not horrible, it works.
Kira
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Jo, you're a trooper!
And you've got a great therapist and a very workable relationship with her. Don't let us all confuse you, because you've got good help and it's working! That's what counts.A craft show -- how wonderful is that! I hope it's all joy.
I love "crafting" but have never taken the plunge and tried to sell, though I sure do love to stroll craft shows. You're an inspiration. I've been making small pocket fairies, inspired by Salley Mavor's how-to book:
http://weefolkstudio.com/Ltd_Edition.htm
Only mine have one arm LE wrapped (with bandage-colored yarn over cotton batting) and instead of flower-petal wings they have butterfly wings in shades of teal and blue. Obviously there's no market for fairies with LE
, but it sure does satisfy me to make them! One-track mind here...Hope your craft show sells out!
Binney0 -
hi ladies, i also didn't need 23/7 to begin; but wrapping is the most imp tool in my kit..!!!
Binney: i love, and collect fairies, also..!!!! i think that site looks interesting..thanks for that!!
I had to do planting,and moving yesterday. the condo im at is replacing fenses, and we have a shade house onour little patio. i thought i'd cruised by wrapping last night, but nope..all swollen today, so taped now. hope you can read what i typed!!!
on to the new gloves , soon as my thyroid starts working better. as it starts upo on meds, i find i sweel more. hope it'll change as i adjust.
the heat indes was 112 today. it doesn't affect me, but i was outside, so, thats' why its bad now. i hide out when its' hot/humid here. its thehome to the air cond resteraunt; or home and to the pool, for me.
i'm sure a few days wrapped will clear it up, and i have extra gloves im wearing. need the jobst for everyday, tho... i tried less comp. like Binney said, and the pair im using are tighter than the jobst were..i'll just keep plugging along in the meantime........3jays
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forgot to add ((((((dawne hope and (((((jira))))) SUZYBELL..2 things.. ya can't cure BC; nor Stupid!!!!!hahaha.....3jays
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JO-I was wrapped for quite awhile and was able to do almost anything. You can move your arm quite a bit. I teach and do a lot of writing with a pen, grading, using a mouse, keyboarding, It was a little slower but I managed to learn how to do things. I really got used to it and wondered what it would be like without. But it was only one arm--albeit my dominant one. The only thing I did not do for that period was teach calligraphy. I could have done it but my writing was not at its best. Two weeks is doable. Where do you show your crafts? I do cross stitch but am not really "crafty" but I love to go to arts and crafts shows. Such ingenuity! I know you and your therapist will decide what is best for you. But don't think of wrapping as this horrible, looming thing. Becky0
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so I hurt my good arm...now I have a velcro covered splint duking it out with my le glove.
OY VEY
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Cookie, that is truly the pits! I can't figure out if it would be better,if you have to injure an arm, to injure the LE arm since after all it's already limited or to injure the good arm since then the LE wouldn't flare. Sigh.
Had a bit of a scare. I saw a very small infected pimple on my LE arm. Did the wash, ointment, don't compress or massage thing and IT WORKED! Infection gone.
Until next time.
Leah
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Sorry to hear that cookie. Watch the sticky side of the velcro with your glove, velcro loves to grab those garments and snag them.
Sheila
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Sorry Cookie-Hope it heals fast. Becky
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Cookie, having broken my LE hand, I'd have preferred to break the other one...Ironically, I felt no stigma going out in public with the cast--got lots of sympathy, where I won't venture out when wrapped....
Kira
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I understand how frustrating it can be to deal with this problem. When I first was diagnosed with bc I thought I would opt for a lumpectomy after finding out facts of possible lymphodema with a mastectomy. I have lobular bc and they found it insitu in the other breast as well, so I chose mastectomy. My surgeon is a woman and she told me if she finds cancer in the nodes she takes everything... What? Anyhow, at that time I was only concerned with living cancer free. I was told that some women lose only one node and get lymphadema and some lose 20 and never get it. There is no certain way to tell. Then I was told that some people have lots of nodes throughout certain parts of the body and others have little numbers of nodes and if that is trauma then some can handle it and some can't. My therapist told me she is working with a teenager who cut herself shaving and is now developing it in her leg. I had been going to medical massage theraphy which my insurance pays for up to a certain amount. Recently, I went over the limit and got a bill. They charge $500. an hour! I was told by a specialist that the massage helps to get the initial swelling down after it develops but wrapping and arm sleeves is the only way to keep it down. The massage is only temporarily helping. The known specialist for lymphedema is here in Illinois, he is Dr. Joseph Feldman L MD. He helped me and wrote a script for a custom made sleeve and gauntlet from Germany that holds the arm well. I did follow his advice to get my arm down before the sleeve was made in order to help keep it down. I hope to get it down even more, I have another appt. in Sept.
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JO-Wow! If you are wrapped you will be the ultimate challenge that you can do anything when wrapped. Your craft projects sound wonderful. Do you have a website? Good luck. Becky
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Hi Sistas
I have not posted here for a while but i do read all your stories/problems.I now have a problem...I dont have Lymphedema I have edema...3 Drs. and my Pt said so.it is/was very mild and im doing very well.My questions are 1-I did Pt for 6 tx.and was released and told to wear a compression bra 24/7...i did that for many weeks.then i was told i could wear a sports bra 24/7.i did that for many weeks.i feel great.no swelling altho i do the manual massages daily along with my other exercises.NOW i bought the Genie bra....it feels wonderful....im wondering if i can graduate to wearing that most of the time. is it possible?is it too soon?24/7 for 3 months sounds like a bit much or am i just looking to move on????I know Binney and Kira are the experts.DO EITHER OF YOU HAVE ANY ADVICE FOR ME?????/thanks.hugggggggggs K
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There are really no strict rules about compressing a breast...if you don't swell in the genie..it's probably ok. The compression bras have not really worked so well for me...I just have to try everything.
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Thank you Cookie
I keep on changing bras hoping im not doing anything wrong but I do feel fine....Will we ever stop worrying?
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Hi ladies, I am wondering if anyone on here gets acupuncture. My therapist told me not to get it on the side with LE. What about the other side? Is that overkill????? I've been going for acupuncture for the past 1 1/2 yrs since my bilat. mx. Anyone? Any thoughts???? ~ Daiva
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Hey Daiva!! I do acupunctre but not on my mx side. I love acupuncture! I mostly get it for back and joint pain. I actually rarely get needles in either arm now that I think about it.
Hope you are well. I just woke from a nap...now I am gonna be a midnight crawler!!
Diane
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I think I have finally found a comfy bra that covers that back dog ear where I swell. I will let you know for sure if it works out. I found it at Lane Bryants. It is cotton with spandex and I wore it with my foam foob just sitting in it and had no problems. I ordered some bra pockets that I will try to sew in at some time if it works. Fingers crossed....I didn't like my compression bra at all. It made my chest hurt and hit my scar tissue where the drains were big time.
http://www.lanebryant.com/cotton-no-wire-bra/p31347/index.pro
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Hey Diane, haven't seen you on this thread. You have LE? Hope not! The acupuncture is helping me with a bunch of things and I prefer not stopping with the needles in my arms.
Cookiegal, what would you say to someone with mild LE (trunkal and in arm) about it. Worth the risk in your opinion and experience?
This is all pretty new for me. The sides of my chest have puffy areas of swelling and it turns out it's also LE. Any experience with the Genie bra? The bands of most of my bras are bothering me because I have sore bulges on both sides - esp. the right. I'm wondering if a Genie bra might be more comfortable? I saw someone recently posted something about it but couldn't find reviews from you ladies. I'd love any input. Thanks, Daiva
~ Daiva
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I have LE and am glad that that is all I have to show for nearly losing my life.
Just to place things in perspective, I looked after my Dad long before I was sick, when he was sick and he was in misery. Dad's LE was monumental. His arm was the size of a couple or few legs. He could not use that arm when it got to elephant size, and he had to carry a pillow to rest it on so it would not hurt even more. In the end, the oncologist said he could have been saved if he had let them amputate that arm. The lesion that killed him was in the armpit. I had to do a final favor for him when he knew he was dying. He had a traffic ticket for not fastening his seat belt. He couldn't do that because his arm was inoperable, but the officer did not listen but just reached over and fastened his seat belt. When Dad got home, he could not unfasten that thing and had to sit in his car for four hours until his wife got home and got him out of the car. That was so humiliating to him. But he was so sick, he forgot his court date and a warrant was put out on my old Dad for his failure to appear He was in a panic. "I don't want to die a felon!" I wrote the judge and sent the check for the fine and asked that the charge be dismissed. I also sent a note from his doctor saying he could not fasten his seat belt or sit for an hour in court and should have had a handicapped hanger for his car but he'd refused that because it would embarrass him. I got the charges dismissed, and the man was so happy, but he was still dying. I couldn't stop that..
So I get the right treatment, and take care of that thing. There are very good lymphedema physical therapists out there, and you all should call your local hospitals and ask for them if you are not referred.
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Yellowdoglady,
My heart aches for you and for your dad. I am so glad you learned valuable, if painful, lessons from his experience, and I thank you for sharing your story here. Perhaps you will save others from your dad's mistakes. You certainly put things in perspective.
Dawn
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(((((Yellowdoglady)))))
Thank you for telling us about your dad. You were obviously a source of comfort and help to him.
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XRaygirl---I posted about the genie bra....I do like it very much...not too much support but just enuf for where i need it AND it does not cut where I had the SN removed...Not so sure i could wear it everday but im doing real well with it.here is the # if you are interested 1-800-388-2356.Its a buy 3 and get 3 for free.If you need any other info please PM me.huggggggs K
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