GRRRRRRRRR I HATE LE..........
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Kira and Binney. Great job on the new page. The Dr. did a great job and wow so much good information you can print and take to your non believing Dr's. If you have facebook. Lymphedema Guru posted a link today. Way to go.
http://www.facebook.com/home.php?#!/LymphedemaGuru0 -
Jo, at least he does write the scripts. The web page has imbedded links to articles and videos, and hopefully, he'll know where to look if he needs an answer to his questions.
LE just doesn't get taught, so no one learns...
I don't get the denial thing, but it happens all the time--"none of MY patients..."
Kira
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Wow! Thank you Kira and Binney for the step up/speak out site. I read the new article to the docs. I loved it!
Especially this:
Lymphedema is a disease of abandonment and misunderstanding. It is NOT just swelling; it is derangement of the lymphatic system, derangement of connective tissue, progressive disability and impaired lymphatic functioning. It is a dreaded complication for very good reasons.
Thank you for standing up and speaking for us. I think I would have been in the nut house by now if you all hadn't been here. THANK YOU!
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Dawn-Hope, working on the site helps me so much: along with gently helping me get a grip when I developed LE so soon after surgery, Binney and Jane asked me to help them with the site, and it is such a relief to be able to DO something.
Other than manage my LE.
I saw my gyn this morning for a pre-op before the dreaded D&C next week (polyps on tamoxifen) and she said "Your arms look amazing, you'd never know you have LE." and I said "Look at my hands, look up by my knuckles and compare the sides." And she looked for a moment, and said "Oh, NOW I see it." And she's a great doctor and really cares--the topic came up as she was writing orders to leave my left arm alone.
I like the line you highlighted also. Another favorite was "None of my patients get LE: statistically impossible"
The site came from Jane wanting to pull together the wisdom of the boards and Binney, and the boards feed the site.
Kira
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Dawn, it's Jane (OneBadBoob) who does all the formatting and page designs, connects all the links so they work like magic, and keeps track of all the needed changes, permissions and contacts for the site. She's always coming up with ways to make navigating the whole site as easy as possible. (Because, she says, we LE gals can't put up with a whole lot more frustration when we're looking for information!
) It never ceases to amaze me how she pulls it all off. Enormous amount of work, and she makes it look easy.THANK YOU, THANK YOU, JANE!!
Hugs,
Binney0 -
Oh crap. I just had my annual skin cancer screen. The good news is no skin cancer. The bad news is my dermatologist says there is fibrosis in my upper arm, which there wasn't last year. My diagnosis has been mild LE. Has my stage changed based on fibrosis, even if my measurements are constant? What, if anything, can I do to stop the progression, or reverse, the fibrosis? My do-it-yourself tools are MLD, stretching, daytime compression garments, and nighttime Solaris. If my LE stage have progressed, I am thinking maybe I can convince the insurance company to approve more LE tx, even if my max inter-limb difference is < 2 cm. KS1
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Can you explain what the fibrosis is exactly? What are your symptoms?
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KS, yes, the fibrosis is an indication of Stage II lymphedema. It can be reversed now, but you need a hands-on therapy intensive to do it. (Don't be alarmed at the word "intensive" -- it doesn't mean anything painful, just time-consuming: daily MLD and wrapping by a therapist and prescribed exercises). Stage II untreated leaves you at greater risk for infection as well, so use care in avoiding any cuts, scratches, dry skin, whatever.
Get a letter from your dermatologist noting the development of fibrosis since last year. Launch a full-scale appeal to your insurance company, and start looking for a therapist you'd like to see. You'll need a prescription from any doctor on your team.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmWhen I've filed appeals, I get as many pages of educational material together as possible and take them to my oncologist to fax with my appeal, instead of sending it in myself, because they're obligated to read whatever a doctor submits. My feeling is that the more information they have to read, the better (for all of us!) I always include the entire Womens Health and Cancer Rights Act, which mentions LE (highlight it for them) as requiring insurance coverage. It's here:
http://www.dol.gov/ebsa/publications/whcra.htmlYou might also want to copy off the latest page from StepUp-SpeakOut, which is addressed to medical providers and discusses diagnosis and the infamous"2 cm" rule:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmTalk to the folks at your doctors' offices and see who seems to be most willing to help you with this, and get them on-board. You'll want to review your own insurance company's appeal processes as well as your state's insurance office. Go for it!
Leslie, hi!
Fibrosis means a hardening of the tissues. It's the body's reaction to inflammation, an attempt (but a bad one!) to control the tissue damage from the inflammation. Lymphedema, especially uncontrolled and untreated lymphedema, is an inflammatory condition that leads to the formation of fibrosis. At this stage it can most likely be broken up by a knowledgeable therapist and good therapy. The trouble with leaving it there is that it leads to further lymph blockage and eventually to arm weakness and loss of range of motion. It feels like a general hardening of an area of the arm. Unlike early stage lymphedema, finger pressure in an area of fibrosis does not leave a long-lasting indentation. Does that help?Go, fight, win!
Binney0 -
Morning all.
I hate LE at present. Have developed large area are from my shoulder to collarbone and down under my arm. BS is concerned about fibrosis as there is large hard area in the centre. Luckily she is very aware of LE and has a nurse who can evaluate all patients. I do have LE therapist as well. We have excellent LE services here in NZ and the NZBCF have just added a very good website about LE.
Any way I am angry this has happened as I really try to manage the LE I have and my arm is under control ( except for the handbag under my arm) at present. I do massage and deep breathing exercises. Grrrrr---. Its now strapped with kinesiotape so hope that helps but I will get to the LE PT for a proper massage this week.
I am having a scan this next week just to check there aren't any other reasons for this swelling.
Alyson
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Alyson, the web site from NZ is great--you are WAY ahead of the US on physician education efforts.
http://www.lymphoedemanz.org.nz/
It stinks to have persistant or new swelling when you're so compliant. Truncal LE is tough to manage, here's a link about it (although I bet you know all of this)
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
I really hope the scan is completely reassuring, and you can focus on the "hand bag" you never odered.
Kira
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Well, I've been wearing the bandages for a few weeks already, and I've figured something out.
Even though the LE therapists will tell you that the wrapping during the intense phase of treatment is because it gives better compression, the real reason is that, by the time you're finished with daily wrapping and you're starting to wear a sleeve you're so fed up with the bandaging that you're not tempted to leave the sleeve off...
Leah
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Leah, exactly!
It's funny how many posts I've seen here by women who are soooooo thankful to get their garments after several weeks as a Wrapped Wonder. Without that crucial wrapping step they'd have tossed the stupid garments in the trash without another thought.
Dang, those therapists are clever little buggers!
Binney0 -
today was a warmer day.... mucho humidity....... no snow..... some rain...........
and guess what.......................
MY LE SOARED !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have not had an issue for some time........ now... heat is back.. ( for a minute) and my LE is back. The pain came back.......
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
can I say shit , too??? Or is that to harsh a word for a good Christian woman like me ( I really try)....
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
ladies.......... I am sorry you are suffering too......... it just is terrible.
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Estepp - I hear you about the heat! It's been warm here all week and mine has been worse too. What IS it about the heat that makes LE flare?
I've even noticed that when it's warmer and I drink a hot cup of tea my fingers swell worse. I hadn't noticed that when the weather was cold.
I hear you!
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I hear you ! I hear you !
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for me, its neither the hot, nor cold.. they both are bad/ im in Fla., so stey in, or in the pool all summer: the thing that gets my LE the worst is when the weather CHANGES.. either up, or down. the first day or two is miserable!
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Heat with humidity is the worst for me, but I don't like it when the weather changes either. I can always tell when a front is coming through. I feel like a human barometer!!
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Long trips in the car, take it's toll. So I try to raise my had & squeze it several times during the trip. NJ
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I agree, long car trips are not good, luckily I can rest my arm up if I am not driving. Driving makes it very tired, I also try to massage it from time to time.
Have scan tomorrow on swollen area, I am sure its LE, so not sure how to move it from up round my shoulder and neck. I am sure the humidity is not helping things.
Alyson
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I do well on long car rides. Go know. The position is good for my arm - I think because my elbow is extended holding the steering wheel. For long rides (since I'm just sitting there and no one can see me anyway) I wear my ridiculous vest.
I also do badly with weather changes and with weather extremes. Hot & humid is bad but cold is bad too - maybe worse. I find cold & damp is most painful - don't know why. grrrrrrrrrrrr.
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Hi all
It really is a relief to me to read all these rantsbecause I am right there with my Big Fat Arm and my swollen boob and area around the ribs.I have had an intensive course again I have been diligently wrapping for at least 3mths and I cannot see any improvment that remains permanent. The breast fibrosis hurts like hell if I overdo the massage. There may be a slight softening in the forearm-maybe but its been such hard daily work. I reckon I spend more 'hands on ' time on my arm than I ever did on my kids
So... Has anyone tried kinesio taping -any good results out there?.I dont know if i will find a therapist here who does it but I can ask around.
I keep looking at Lindalou's pictorial and hoping but I have no way that sort of improvment. I am stuck at 4cm.
Binney /Kira and all at Speak out-its a great site and I wanted to make a donation but it was not possible to do so using paypal-would you let me know when this gets sorted.
Best regards to all
Anna
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Anna, thanks for the praise of stepupspeakout--at one point we were thinking of taking donations, but decided that we'd just run it ourselves. And the person who does all the heavy lifiting is Jane/Onebadboob--she's the webmaster.
So sorry that the first hint of warm weather isn't agreeing with LE, and Anna--how incredibly annoying to be "stuck"--for fibrosis, some women try variations of foam, like komprex, and jovipak has these cherry pit packs that are really aggressive--need to be used with caution.
I am going for a gyn procedure tomorrow, and pulled out my "g-sleeve"--a piece of pink stockinette that says "No IV/Blood pressure/blood draws"--I'll be a lot happier when it's behind me....
Kira
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Yes it is definitely pink sleeve day. I have my scan this morning and one time the rad doc wanted to use my LE arm, to which I said no, over my dead body. We had quite a discussion about such things and think I helped educate him a little. Now I can actually tell them to look at the NZBC lymphoedema site. will be pleased when this is over.
I do need a new bra but can't get the one need, its a real problem for LE women here.Just another reason to hate LE.
Alyson
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Kira, Wishing you the best on your procedure tomorrow. I'll be thinking of you.
I forgot about long car rides. They're the pits. Our trips were always 2-3 days and before I figured out salt is a culprit. It's difficult to find healthy food while on the road. However, being sedentary for so long and having the sun beating down on you through the window doesn't help either. I'm not eager to try again any time soon.
Anna - My LE therapist tried kinesiotape recently on my truncal LE, and I loved it! I felt immediate relief - probably partly because it had the effect of minimizing some of the pull of my implant, which I think is somewhat responsible for the disruption of lymphatic flow. I need to get a roll of tape. I have an unused piece of tape she cut to use as a template, but I need a refresher on exactly where to place so DH can do it. I think Susie uses kinesiotape, so maybe she'll be along to offer more info.
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((((Kira)))) Good luck tomorrow.
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Good luck tomorrow Kira.
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(((((((((((((((((((((KIRA)))))))))))))))))))))))))))
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just passing thru. i get alot of suppoert just knowing im not alone here. be well. 3jays
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Kira
Hope all goes well for your procedure today.
Anna
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kira, sorry i missed it before. will be thinking of you tommorrow. 3jays
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