Cupping?

Tina, I'm with you 100%.

We've already had to "correct" the exercise blog post, and the blog, IMO, is all about alternative stuff and avoiding environmental hazards, and yet, the basic, outdated information on LE on this site has not been updated.

And every day, we get basic questions from women who were not given any LE risk reduction information, and they can't find it on this site.

I do deeply appreciate bc.org--or I'm just some whack job that hangs around the LE forum (Binney says we stay because there is injustice and ignorance, and I'll take that over whack job) but I really wish the blog was carefully monitored and did not provide misinformation.

Marissa Weiss is a radiation oncologist: I work for one--we see LE every single day in the office: so I'm kind of at a loss at how she can ignore the need for current and accessible information on the site. Unfortunately, she's also now a woman with "at risk" quadrants--and we sure don't want any more sisters of swell here.

We are not making a difference together if we're at cross purposes.

I think we're pretty focused on this forum at educating and preventing and helping women treat LE. 

Sure wish bc.org would join us in that quest.

And SUSO can channel our inner Komen and ask that they cease using our slogan.......

I am giving a talk to medical students about survivorship and LE, and I went to create a slide of reputable sites on the web, and had a hard time finding them---reputable source of information--that's a good slogan.

Kira

Hear! Hear!

Tina, thank you from my heart. Yes, it's a bare bone they threw our way, but when you're under the table starving even a bone is easy to mistake for the real thing. No, cupping has nothing to do with for-real lymph system management -- it's pop therapy for resort spas, and even there it undermines our efforts as lymphedema patients to be heard.

We've tried to find a way to contact Marisa Weiss at this site to offer guidance in finding the lymphedema expertise they need to address lymphedema issues, and we've tried to access the advisory board for bc.org as well, all without success. They've designed it that way, and I understand that. But we've also tried hard by posting here and in PMs to the mods to suggest excellent sources of reliable LE information that they could tap into. These are researchers and clinicians and lymphologists, busy people but only too willing to help assure that the information given to at-risk women is accurate, timely, and accessible. These experts are not hiding out, they're available to patients and professionals alike and they truly want to "make a difference."

So, Mods, how about it? Is there any way you can help us set up a dialogue with the bc.org powers-that-be?The lymphedema community has long held a dim, dim view of bc.org's rash of misinformation. And clinicians, in referring patients to this lymphedema discussion board, routinely warn them about the information sections of this site. Can we help you change that? Can we work together to make this the go-to site for lymphedema information, risk reduction facts, accurately interpreted research news, and plain upbeat, can-do advocacy? There are many, many women here willing to work with you to make it happen, and we can steer you to willing experts ready to work with you too. Tell us how we can help.

Binney

I am more curious about why acupuncture is contraindicated. Because it causes breaks in skin? Acupuncture needles are about the thickness of a human hair, far tinier than hypodermic needles.  The standard of care in the US is for acupuncturists to use only sterile, single-use needles. The needles are so cheap it's not financially worth it to try re-sterilizing needles.

 Disclosure: my husband is a licensed acupuncturist, and quite cautious. He did try needling a few times to loosen up my Mx scar tissue; don't think it did anything, whereas scar massage has definitely been effective.

 I'll take a look at that reference and see if there are documented studies or if it is an empirical caution. I agree being cautious is a good thing with LE! 

Add me the list of those who have had lousy care from a LANA-certified therapist. Yes, a good screening tool, but no guarantee. Often when we start LE therapy, we aren't educated about proper technique and treatment, so we don't know the right questions to ask. I found a good LANA therapist, but since she was unavailable a couple of years later when I needed additional therapy, I used another LANA therapist who was experienced and considered very good. IMO, those therapists are the scariest, because they often have a certain amount of credibility. I am embarrassed to admit that I wasn't expecting poor treatment with her, and because of that I let my guard down, which I never would have done with a lesser known therapist. Unfortunately, sometimes we don't know until the very moment it's happening that something bad is being done to us. Even when we know what is considered proper treatment, we have to remain diligent.

Tina, a community member, nowheregirl (formerly Timtam) posted an excellent illustrated guide to posting pictures. The Help section (in the top right corner of any page) also has instructions. Please send us a PM if you need more help.

Judith and the Mods

Thank you, Judith and Mods. I will try again after reading tutorial. Okay, I got it!

The red rash was not present when I had the cupping done, however, it was already causing back pain and was the reason I went for a massage. At 50yrs, who would think I'd have shingles? It didn't present as nerve pain, rather an achey feeling. Had never had cupping and it sounded harmless. Obviously, I never would have done if I had known cause of pain. The one cupping bruise slightly overlaps the edge of where rash developed. The second spot is partially covered by my bra. The process was painless, but those bruises were there for a long time.

Tina, thank you. That's pretty vivid, and clearly a no-no for any at-risk area. Stimulating the lymph system -- NOT!

When I was a pre-schooler I discovered that if I put my plastic milk cup over my chin with the lip in my mouth and sucked the air out of it, it would stick there. I thought that was really cool. But my entire chin turned purple, which at that age was pretty impressive. I kinda liked the shock on everyone's faces when they saw me, and I was sorry when it faded. My mother had a different opinion of it, though, because she made it clear it better not happen ever again. So, whadda ya' know? Mother knows best after all!
Binney

Ah, Binney...clearly you were a very plucky child!  Presaged your adult tenacity in pursuing LE justice!