Friday, November 8, 2013

A Little Bit Louder

The guys are on the road to their adventure as I type.  They'll hit the trail at 4am tomorrow for their self-supported, 48 mile, run of insanity.  I've been thinking a lot this week about the power just a single voice can have, and I hope that we can combine our voices together to be as loud as we can to raise awareness.

I recently read a blog post on lymphedema and acupuncture.  The author’s purpose was to debunk the idea that acupuncture would be useful in treating lymphedema, but I got the sense that the real driving force was to just debunk acupuncture in general.  True, treating lymphedema with acupuncture could potentially be a very bad idea.  You really want to avoid any break in the skin in a lymphedematous limb, including acupuncture needles, but needles elsewhere in the body aren’t an issue.  I personally am a huge proponent of acupuncture, as I myself have experienced transformative results from acupuncture treatment, but I get that there are folks out there who see the world as black and white, with no areas of gray, and research on acupuncture is kind of a mixed, gray, bag.

Well, lymphedema is basically a whole world of gray.  You frequently hear that lymphedema treatment and management are an art not a science, and my experience holds that to be true.  I think that is why there isn’t a whole lot of research done on lymphedema: it’s not something that some (many?) scientists know how to approach.  I’m being general here, and sorry if I’m offending any of you science minded folk, but I am not one of you, especially when it comes to my daughter.

Being a mom has taught me that following my instincts is almost never wrong.  In fact, I have, in the past 17 months, not once regretted a time I followed my instincts with regard to Juniper.  I have, however, regretted many, many times that I did not go with my gut, and instead went with logic.  Lymphedema treatment is much the same way.  There is no chart you can cross-check symptoms against, because it is so different for each person.  You can go with a basic understanding of what works and what doesn’t, but from there you have to forge your own path. 

This blog about lymphedema and acupuncture really riled me up because the tenor of the article was that lymphedema is a problem that is going away.  The author cites statistics, which state that since fewer patients are having lymph nodes removed, fewer patients experience lymphedema.  Well, hurray!  That means no more lymphedema, right?  If you’re reading this, then you know that’s not the case.  Lymphedema still happens to breast cancer survivors (and survivors of other types of cancer) and lymphedema still happens to kids and adults for no apparent reason.  Blogs like the one I spoke about aren’t helping us spread the word. They’re helping to sweep lymphedema under the carpet as a condition that ‘not that many people experience’ or that ‘just isn’t that big of a problem anymore.’  We need to have a louder voice than theirs.

 Please help us spread the word.  Lymphedema still needs research funding (in my opinion more than ever), and we still need support for the Treatment Act (again, more than ever with how polarizing health care issues are now). 
Then and now, like the race day mohawk?

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