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Jul 22, 2009 10:22PM
Love that guy, NED! Congrats, shrink, and dance on!
Shrink, I'm with you on being bummed that this never goes away. Every so often that realization hits all over again and I have a melt-down. Happened last time not too long ago when I was in a dressing room trying on some of those flowy, feminine blouses that hark back to the free-wheeling 60s. I was thinking graceful and free-spirit, but the mirror was saying that the stupid sleeves were all wrong and the compression bra looked silly peeking out the top. (Fortunately I had my daughter with me, who never asks me to explain my bad moments and just fishes in her purse for a kleenex -- love that lady!)
Anyhow, I'm wandering here. You asked if it was critical to wrap all the time. By which I assume you mean is it critical to keep your arm as reduced as possible. The way I look at it, whatever works to keep your LE in control, as long as it doesn't harm you, is what you should do, not some set of rituals that someone prescribed but that don't seem to do anything to control the swelling. If the wrapping controls the LE, and nothing else does, then I guess that qualifies as critical. If swimming five nights a week works just as well and it's a lot more fun, then do that.
Obviously, what works for most of us (and has been adequately researched to back it up) is Complete Decongestive Therapy, which involves wrapping (at least for the intensive phase) and other compression, daily massage, exercise, and careful skin care. The aim is to reduce the swelling, maintain the shape and size of the arm, improve the function and health of the lymph sytem, and prevent infection that can worsen the condition. Some of those are more effective than others for each of us, on an individual basis. And for some of us those goals can be met even without, say, daily garments or night wrapping. But the point is the GOALS, not so much the techniques. Our therapists, if they're good ones, can be our best resource for divising acceptable ways to keep our LE in check and also get on with our lives with the least amount of fuss and limitation.
Things change, and we have to pay attention, because what was working well for a time may stop working and we need to re-evaluate our coping plan. It's always in flux. We have to keep on paying attention. That's a challenge, but in our better moments it can at least be an interesting challenge, and for sure we can be proud of ourselves when we rise to meet it.
But probably that's not what you're asking at all. If what you're asking is, what will happen if we don't do all we can to control our LE, that's another matter. The most serious risks are infection and progression. Infection is obvious, and controlling the LE can limit our risk (though not eliminate it). But without good control the LE progresses through its stages. They aren't (as we might expect) about the size of our arms, but about the internal damage that results from the presence of stagnant, protein-rich lymph. Our tissues don't "like" excess protein and react to it with both inflammation and the laying down of fibrosis and fat tissue beneath the skin. This in turn leads to further blockage and damage to the lymph system and the immune response. Obviously not good.
But LE care is hard, and at times incredibly discouraging. And having to find our own way to get continued decent care because the medical community is unaware of what we're dealing with is truly daunting. In the end we each make up our own minds what good LE control is worth to us, and what kind of compromises we're willing to make. What's critical for you may not be critical for me, and vice versa.
I'm still rambling, I guess. Is any of that what you were asking? Your arm is worth taking great care of, Shrink, because YOU are worth taking great care of. I sure wish this were easier.