May 20, 2006 07:16AM Binney4 wrote:Hi, Liz,
Welcome, and I'm really sorry you have to join us on this LE board. I hear you on the shock and distress (frustration, despair, rage, grief, fury, sorrow, stunner, YUCK!) The initial blow is the worst, but we all go on coping with these emotions over and over, so you're not alone and we're definitely here for you.
But on the practical side, there are more comfortable solutions to your problem than you've found so far. It takes some trial and error. Here are a few pointers from earlier posts on this board:
Yes, massage a couple of times a day should help improve your situation. If you're short time (or motivation!) the most important steps in the massage are clearing the nodes in neck and groin and then massaging the chest/side/back area. Some of us also clear the neck and groin before taking a shower or bath, and then use the soaping, rinsing, drying, and lotioning as 4 mini-massages by stroking gently, always in the right order and direction. (Does any of that make sense?)
Here's a web site where they'll help you find a bra that might be right for you: www.womanspersonalhealth.com . Don't hesitate to call the number on their homepage and speak to Barbara -- she'll help you find what you need. Some of us with chest/breast LE use bras that have wide straps, sides and bottom bands for extra coverage and no binding. There's a thread a little further down on this board by Kimmytoo called "Compression bras" that will give you lots of suggestions of what's out there. NPat has a post on that thread that lists the bra style numbers that she uses. These come with prosthesis pockets that keep your prosthesis from wandering.
Some of us have found sleeves and gloves by Bio-Concepts helpful. Their customer service is good, their prices are competitive, and their fabrics come in 30 or so colors so you don't look so much like an ER escapee. They're a small outfit, though, so a lot of fitter/therapists don't know about them. If you're interested you can call them or have your therapist call. Web address is: bio-con.com and the contact person there is Lari-Ann.
Living in the Arizona desert I can empathize with the heat issue. You can occasionally wet down your sleeve to cool your entire arm. Pat it dry with a towel and it won't drip on anything. Just make sure you don't stay wet too long (or wet it down over and over), as that might encourage fungus -- not good!
I have to say that the problem of not being comfortable with the way you look is probably the hardest part of this for me. Makes me want to hide out. I can't wear a bra at all because of the chest LE pain, and it's very hard to feel presentable. It's also way too easy to feel pitiable, especially when I'm out shopping and seeing all the things I can't wear. Even the ones I would never have worn before make me sad because I've lost the freedom to CHOOSE. So you're right -- it's a bear. Big, ugly, rotten, persistent, destructive bear.
And just like dealing with bears in the wild, information and planning ahead helps with LE. Takes awhile to work out what garments and routines work best for you, but it's well worth the effort when you can take back control of your life and your feelings.
Hang in there! ((((((Hugs))))) to you!