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Sep 5, 2006 04:02PM
Yeah, I hear you. I keep telling myself this is just a hard time of year, because it's the tail end of summer and I'm so thoroughly sick of being hot and fighting all that. But I too am grappling still with self-image issues I never even thought of. There are so many SMALL things I can't do, or can't do easily, or can't do for more than a minute or two. And door knobs are hard to turn because my glove slips on them. I drop stuff. I have to be careful not to get my gloves grubby. I'm sick to death of not being able to feel things with my fingers and palms the way I used to.
I too am thankful, mostly that I can keep the swelling (and consequently the pain) in control. But then I think: it takes 24-hour-a-day compression and all the time-consuming massage and exercises and trying to remember the deep breathing all day, so what's the difference? (For me, the difference is the pain relief -- but what a price I have to pay for that!) And then too, I have to fight with my insurance every couple of months over LE gear, I can't travel anywhere without wrapping up like a mummy (and I have to try to remember all the steps every time, too, since I'm not doing it on a daily basis), I'm watching out for salt in everything I eat, and I'm so tired of "sticking out" in public, and of trying to "explain" LE to indifferent people who wonder why I look like I do.
My biggest struggle is this: after my first mastectomy, and even after my second, my prosthesis fitter was so careful to make sure I looked absolutely, wonderfully normal. All sorts of measurements, more bra styles than I could ever try on, every size and shape of prosthesis, and I ended up looking fine. Just like "before." New hair after chemo, new makeup ideas from "Look Good, Feel Better," new prostheses -- SO MUCH compassion and effort from everyone to make sure I looked unfazed by a year of bc treatment.
Then along comes the LE, and all of a sudden the attitude is: here, wear all this stuff, exercise, watch what you eat, freak over mosquito bites and hang nails, no bra at all that I can use because of the location of the chest swelling/pain so I have a bulky vest that they can't even seem to get prosthesis pockets on -- and the attitude is, "Well, aren't you just so glad that you're alive!!!"
Well, sometimes it's plain WORK just to face getting up in the morning and getting out of my night gear so I can get into my day gear. Sometimes I simply don't want to appear in public at all. Sometimes I swell for no apparent reason and whatever I was planning to do has to be put on hold. Sometimes I try something that I'd swear was perfectly innocent and my hand swells, or my chest swells, or the pain starts in again. Even with all the fun and sheer work of grandkids here this summer, there was never a minute when the LE wasn't still giving me grief, making me aware that it's still running the show.
I talked to my therapist about the emotional issues and she (who has14+ years experience treating LE, knows everything there is to know about it, really is brilliant at it so I have no complaints) said, "What emotional issues? This is LE, it's not quadraplegia! This is just massage and compression! The only patient I ever had who had emotional issues over LE was a guy who had a billion other problems already, including drug addiction."
The one thing that keeps me going is the determination that NOBODY should have to go through this alone, wondering why nobody told them LE was even a possibility, and why when they did they never said what a bust it is. And that includes not just my bc sisters, but those poor folks with primary LE who usually don't find help -- or even a diagnosis -- for years and years. And who can't get insurance coverage for therapy or LE gear even when they DO get diagnosed.
So -- apologies to Luckysmom and anybody else who just happens on down here to this thread and is intimidated and made miserable by the prospect of LE. I usually try so hard to be upbeat and encouraging and to make sure everybody knows there's treatment for this rotten condition and how to find it. But frankly this is the hardest thing I've ever dealt with in my personal life (and I have not been hiding out, either -- my husband and I have raised 9 adopted children and two dozen foster kids, almost all of them seriously impaired physically or emotionally, and we have never shied away from confronting the issues of disease and disability).
But I simply cannot accept what a Black Hole of medical care this thing is, and I don't know how to make that public attitude and lack of awareness go away. Especially not when the stupid condition itself robs me of so much energy and activity.
Whew! -- I feel a whole lot better saying all that. It's been building.