GRRRRRRRRR I HATE LE..........
Comments
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I totally get it about the glove and the handshake.
I bought a pair of matching fingerless gloves from Claires' in cold weather I just look like I am being artsy since the lymph glove is covered.
Also if I am really going to press the flesh, I may switch into a gauntlet, and wear something with long sleeves.
Not a gauntlet fan in general.
oh heavens I am a broken record but when it comes to boob-a-dema the compression bra on it's own doesn't do much, I line it with fabric cut out of a silverwave abdominal band and it works.
Also jogging really seems to help, especially with the silverwave and the belisse.
God I freaking hate the belisse, it's itchy and velcro-y but it works.
Awful shape too...soo freakin boxy.
Sorry Beliesse makers...I have nothing but love for you. It's better than nothing.
Here is a last random tip, I am a full figured cookiegal, but for loooong sleeves, the junior department seems to work, even at wal-mart. I can buy the biggest junior size and the sleeves are longer than for the missy.
xo
have a great weekend!
Cookie out!
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ok, so we moved out of our house, moved all the plants for tenting, moved all the 60 or so bags back in the house, wiped everything in the kitchen down, did i mention>>> my le is insanely swollen and sore now??
i wore my sleeves, gloves, etc.. drank, did breathing, but way...overdid it..
the good news akk is, the p;ants are getting moved this weekend back.. by us, of course. im just taking it easy as i can, and have wrapped my poor le hand to get the swelling down overnite, just to abuse it during the day..
i will not be doing this again!!!
here;s hoping you all remember NOT to overdue it, like i did.......3jays
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I have only had two or three episodes with this. All were after flying in a plane. I wore the sleeve and the gauntlet each time. They took all of my lymph nodes during the surgery. I had 12/34 under the left arm. I have been treated for lymphedema, and for me, it seems to be the massages that I received that helped get the swelling back down. I kind of stopped worrying about this problem when my cancer stage changed from Stage III C to Stage IV. Oddly, all of it is pretty much gone now.
Good luck to all of us who are missing our lymph nodes and have to deal with the swelling, wrapped ugly arms and all of the problems that go along with it. Big hugs!
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Ladies I started a thread on my moms issue if you want to follow it or respond: Could this be radiation burns or cellulitis???
PS I super understand your feelings ducky, I just finished 5 and a half months of (massage) therapy. I have not yet found a compressions shirt that is comfortable (and summer is startng here). I started out with just my left arm and am now bi-lateral and have lymphedema in my chest. I DID get a "pump" jacket that works ok, at least it releives the swelling pain from teh fluid pockets on my back. It covers both arms and is just like a coat, pumps chest and back to the waist...HOWEVER it doesnt do such a good job withteh arms (as the lone sleeve did) so I switch from jacket to sleeve back and forth (hubby hates hooking them up to teh machine). I sit and pump over an hour every day. I just moved my MIL and was having trouble getting my sleeve on and didnt want to go back to therapy so I pumping as much as possible. WHEN I STOPPED everything, which is easy to do...I got a frozen shoulder which was aweful and i couldnt use my arm. So I encourage you to continue fighting the fight. hugs t PS pix to come of pump!
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Hey Ducky! Have missed you. I am sorry things are not getting better. Don't give up on getting the right sleeve. Keep at it. But rant away. Keep us posted. Becky
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Becky.......it is all so frustrating...............my biggest fear is that this is going to go someplace else...............I can handle relatively well the "bad right arm", just concerned it might get worse in another area..................
I had a great therapist..member of LAMA, but it was $40.00 co-pay everytime I went, and I was going 3 days a week....................this is not a "cheap" condition by any means................the appliances are expensive, it is time consuming, and it doesn't seem to get any better.................
If it stays as it is, I can handle that, just could not handle getting massive all over............and honestly, it is not easy doing the exercises by yourself..............when you have an LA therapist doing them, you seem to get good results............oh well, it is what it is, right..........like cancer wasn't enough.........................it had to go another step further for us.....................maybe I need to stop complaining, and look at the many worse off then I, and then say..............Thank you Lord for my "small problems"............................Today is a new day...........
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Ducky, LE is an expensive condition, between the copays and the DME.
And, we have every right to feel upset--some women have published in the Journal of Lymphoedema that they found LE to be harder to handle emotionally than the cancer.
The good news is that you're not ignoring it, and so many women do--they're just so overwhelmed.
It's good to "track positives" but the reality is still frustating, concerning, scary and ignored as significant.
Kira
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Kira............yes to everything you said...................I do believe it is worse then the cancer............(although LE, is less likely to kill you)..........it is still a "forever' condition, which stinks..
People say "how long do you have to wear that thing...........answer "24/7.............comment....................are you kidding me.....................answer............."n'o I'm not kidding, do I sound like I'm kidding"....................................question...........well for how long to you have to continue wearing it.............................answer, "for the rest of my friggin life, but just take it off in the coffin"....;.....................answer, gee I'm sorry....................my last answer kind of shuts them up ........................
It really does stink, but as I said.........I'm a lot better off then most............so "ducky girl, put on your big girl panties, and suck it up...................hahahahahahaha
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Ducky, it's perfectly okay to rant--we all hear you and share your pain. The fact that someone else may be "worse off" than us sure doesn't make what we're dealiing with any less difficult. "Chronic" means we have to come to grips with this over and over, that we get sick and tired of it over and over, that we have to answer everybody's questions over and over, that we have to take care of it day after day with no vacations.
None of that is easy. Big girl panties are highly over-rated.
Be well, Ducky my friend, but do feel free to take your time about it!
Binney0 -
Ducky, I have to say that the "just take it off in the coffin" is one of the best come back lines I've ever heard.
Yeah, who says you have to put on huge panties?
I always say that suffering is not a zero sum game. Someone else's troubles don't negate ours.
Kira
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I WEAR big girl panties.....they don't help!0
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Love the comment on "take it off in the coffin" Yeah someone asked me how long I have to wear it and I said, "I have to wear it for life." 2 minutes later they said"so how long do you have to wear that sleeve, " I repeated the same answer.
Here is what I dream to say when somone is nosey and not truly wanting an LE education. This is my come back:
"So, what'swrong with your arm?"
"I'll tell you, but first you have to tell me what is wrong with your nose?"
(At that point they touch their nose and in wonderment say) "What IS WRONG with my nose?"
I say, "What's wrong with your nose is that it's in someone else's business and your foot has a problem too. you just have put it in your mouth!"
Ok, I will need big girl panties to say, that but not for anything else!
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Hugz - great come back. I like the coffin response too.
I got a sort of answer from the MLDT-Wound care people about the HIVAMAT 200 Deep Oscillation machine from Germany. The hospital had a trial a year or so ago & thought it was OK for breaking up fibrous tissue and was maybe useful for sports injuries, but they didn't think it delivered the wonders that the mfg promised.
Has anyone else had any experience with this as an LE treatment device? Thanks
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Does anyone know of any good videos online that demonstrate the self MLD for arms and/or truncal? I have a handout that my therapist gave me but not sure I'm doing everything right. Woke up this morning in so much pain in both arms, shoulders and breast.
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Kate, check out the videos on the Northwest LE Center
http://www.nwlymphedemacenter.org/
She only demonstrates the "sweep" stroke, but goes over the basics for arms and some for trunks.
Kira
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so this may be TMI, but I have an allergy to some sort of common fungus that people carry, but it gives me a firery red rash. I really don't usually get it on my LE arm, since it's covered up, but boom, I have a bunch of it today.
I know how to treat it, but it scared me to see it all bright and red on my le arm.
It's odd, I can pick it up from a sofa, or a hug, or I suspect my husband. It comes and goes. It totally freaks out my cancer center who sent me for a biopsy that left an ugly scar. It looks like a fungus, but it's actually an allergy to fungus.
There is no FUN in Fungus!
Cookie Out!
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oh cookie, ((((((())))))) Wow, I had no idea of the allergy to a fungus. I hope you found a good allergist.
flash
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Cookie, hope it settles down quickly. What a pain.
And just the same way I run from poison ivy, you have to be wary of everyone--including DH--who may harbor this common fungus.
Is it better today?
Kira
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hugs cookie. It sounds awful. I had a friend that was allergic to yeast..your own bodies normal yeast. It took them many years to figure that out. She was always covered in a raised itchy rash.
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Kira- Thank you!
Cookie- Hope you're feeling better today!0 -
Cookie, I hope you're healing quickly.
I had an "un-grrr" moment yesterday! I'm having a prophy mast soon so I spoke to the head nurse at my local clinic and told her that after the surgery I'll have to have BP taken from my leg. Her reaction was "Okay, that's fine". I asked if she wanted to compare my arm & leg BP before the surgery and she said she'll check with the doc. No argument! I didn't say that I knew this from BCO, I just said "I was told...". Blood draws won't be a problem since all my blood tests are from my port.
Leah
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Leah, haven't "seen" you for a while--great to hear how well that went! Bet you were ready for a battle, and you didn't get one.
Thinking of you! Be well!
Binney0 -
Leah, That's a major un-grr report! Thanks for sharing...it's a victory for everyone!0
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thanks for the "rash" of sympathy----
it is better today, the good thing about this is if it gets the right medicine it goes away quickly. I had one doctor flat out shocked when my worst outbreak ever was gone in a day.
It is different from regular eczema, in that it just pops up, often in a semi circle. (Creepy huh)
As long as it creeps away from my LE area it can "occupy" my left leg or whatever.
Ironically, antifungals and cortizone do the trick. It does tend to creep though, I hit it one spot, it pops up somwhere else.
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I just read on another thread that a woman had her implants swapped out for half the size and then did fat grafting. She said her LE has disappeared and PS thinks the implants were impeding the LE flow. She is doing one more surgery to have the implants taken out all together with additional fat grafting. Then I read on the FDA site that one of the risks of implants is LE. (First time I've seen that anywhere.) Has anyone heard of implants causing the LE or removing them improving it?
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Hello Grrrsters:) I have a question for you based on my decidedly unscientific research on my LE. Has anyone else had joint pain (shoulder) made worse by compression garments? For me, I can feel my shoulder start to ache within a couple of hours of donning my sleeve...but when I take a sleeve "day off" the shoulder feels much better...even when activity levels are equivalent. Thanks! anne
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Kate, you should "talk" to Tina, she had her implants removed. It's on the FDA site???
Do you have a reference? I'm giving this talk to the breast health fellows, and it's already loaded with too much info, but this is important for them to know. For us to know.
Cooka--I don't wear sleeves much but it sure makes sense to me. I got a frozen shoulder from breaking my hand and changing my body mechanics while immobilized for 6 weeks.
Kira
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The little piece of ridged foam appears to be (at least temporarity) working!
Hated 90 angle of above-the-elbow flab is not visable. (The shapes match)
Woo-hoo!
Boy is it tricky getting it in my sleeve though. It was originally cut for my hand, I used to wear it with isotoner before getting custom glove.
Don't hold a party yet, I respond and bounce back quickly sometimes. I once had all my measurements go down after wearing a sleeve for 20 minutes.
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This is the link to the FDA website. It does state lymphedema or lymphadenopothy as a possible side effect as a result of the surgery for implants.
Trish
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Kira- Like I said, this is the first time I've read anything about an implant/LE connection and it doesn't particularly reference implants for reconstruction just implants period. I did read that with SNB the rate of truncal LE is rising. I'm guessing because the sentinel nodes might not necessarily be axillary but could be on the trunk instead? Anyway, wondering if implants somehow put pressure on the remaining nodes? Trish already posted a link but I'll make it active.
On justbreastimplants.com there was a member who developed LE in her hand after her PS used axillary incisions for her implants (which is where my moron of a PS placed mine when he did my revision).
http://www.justbreastimplants.com/forum/breast-augmentation-complications/110599-lymphedema.html
On breastimplants4you.com it states that "upper extremity LE is a common complication following breast augmentation". Funny how this is never discussed when deciding on implants.
http://www.justbreastimplants.com/forum/breast-augmentation-complications/110599-lymphedema.html
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