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Aug 30, 2006 10:34AM
Gosh, PJB, what a wonderful post! I goof off sometimes, and I certainly hope I'm not the only one here who does. And it's especially tempting when whatever I'm doing isn't controlling things the way I'd like, or when it seems to take dynamite to move the insurance people or the medical team to act on my needs. Like Jennifer says, this is for life. And that's a very hard concept to get your head around.
And I'll also second what Jennifer says about getting back on board and starting over. Because, yes, there is damage going on that is not visible. Untreated, LE creates fibrotic tissue inside that not only is harder to reduce, but also does further damage to the lymph system. It reduces the availability of oxygen within the circulatory system, makes wound healing much harder, and encourages the growth of harmful bacteria. That is, it puts you much more at risk for serious, systemic infection (which is, BTW, the medical reason that our insurance companies pay for treatment, however grudgingly: it's cheaper than a week or two in the hospital or -- God forbid, the ICU -- on IV antibiotics.)
As for all of us here being so faithful and so downright cheerful about all this, I've definitely been thinking lately that we're missing those posts that got deleted when the boards shut down a couple of months ago -- the one's with titles like "Lymphedema Sucks" and "I Can't Get My Mind Around This." At the moment there aren't any of those ranting, raging posts going on here, and the newly diagnosed women have been so amazingly stoic about it all -- I'm beginning to wonder if I'm the only one still struggling to stay on top of my emotions and frustration where this idiot condition is concerned. Maybe fortunately, I can't get away with much because I swell so quickly without compression and other self care, and the chest swelling in particular is quite painful. But inside I have to admit I'm not especially accepting of it all.
So from my own seriously wounded state, I want to encourage you anyway to take very good care of yourself, because you matter. If you're not getting the kind of knowledge and support you need from your therapist (not to mention wrapping, which is the gold standard for reduction of swelling), can you find another who will work better for you?
Jennifer, I love your posts always, because you're so direct and clear and compelling. Sorry for the ramble -- can't ever seem to be brief.