Just Venting

Ladies...............I too have LE, and was reading about it before I went for my surgery.......Thank heavens I did because I was the one who realized something was wrong.................It happened about 6 weeks after surgery, and 2 weeks into radiation............

I saw a LE specialist right away, and she confirmed what I already knew to be true........she taught me how to "wrap", and within 2 weeks I went from a measurement of 12 % down to 4%..............She said I "wrapped" so good, she asked if I would mind doing a "video" with her to put on CD's for her patients who had trouble wrapping.................my son did the video, first her showing me what to do,,,,,,,,,,,,,and then we doing the wrap myself.......................she told me I was her poster child for LE wrapping..............I didn't mind at all, as long as it helped someone else.....................

The truth is LE gets little or no attention because every BC patient doesn't get it...........if everyone did, more would be known about it.........................it is outrageous since chemo is done, and then (hopefully). over.....................Rads are also done...........and then again (hopefully) over........................LE is forever...........it is never over, so to me that is equally, if not more important then anything cancer brings to us.................but again...............as long as it is not recognized as a "great possibility"........................it will be treated like a 2nd class citizen.................shameful, but that is fact.............

Maybe we should pick a "color bracelet"..................for LE...................oh, forget that, we wear a sleeve which causes all the idiots out there to ask "WHAT HAPPENED TO YOUR ARM".........................like the woman at the nail salon who said to me  "OH YOU MUST HAVE HAD BREAST CANCER...........YOUR WEARING A WRAP ON YOUR ARM FOR LE.......................I answered.................YEA, AND THANKS FOR BEING SO IGNORANT TO BRING THAT TO EVERYONES ATTENTION......................considering "ITS NONE OF YOUR ;BUSINESS"......................I have met them all.............I have gotten "oh what did you do slug the old man"..............."oh did you break your arm"................what's with the arm statement"......................"is that a new fashion"......................yes, I have heard it all.......................but I usually say  "NO I HAD CANCER".........................shuts them up everytime....................hugs ladies.

Nordy, it really sounds like the ride was good for you. Glad your brother in law was okay in spite of his spill. Thanks for sharing about your difficulty in getting your Jovi Pac. I guess fighting with insurance co's isn't that unusual. I actually have to call Blue X to relay some info, so it wouldn't hurt to use that time to plead my case "live". As you say, sometimes you do reach someone with a sympathetic ear, so I will keep trying. I worry I am so close to exploding that I avoid making a call as I fear it will backfire on me. I like to represent myself in a calm yet firm manner, but maybe a little eye poking would be helpful!




Hey, you know what's funny about the dressing room mirrors? I'm actually getting used to being flat - it's the REST of my body that's gone to pot during this long process that I find depressing! I am more embarrassed about my saggy butt, jiggly legs and love handles than my funky chest. Where is that butt I could bounce quarters off of? Okay, maybe menopause is partly to blame, but I really have never been this out of shape in my life. I know the "just do it" mantra is true, but I have so lost my motivation. And other things have required my attention, but I am starting to see an end in sight and should be able to devote more time to exercise. Thank you for your encouragement and for reminding me that beauty isn't all about our physical being. Most of the time I cut myself some slack, but those dressing room mirrors bring me to my knees! :-)

Don't know about you ladies.......................but here in the Philly suburbs we have dressing room mirrors........................................oh do we have dressing room mirrors.......................we have the type that are 3 way . ......................not only do they show you the pitiful front view of how you look, but their kind enough to show you, yourself from every angle.................now if that isn't depressing, nothing is............................everytime I get in front of one, I 'm wiating for the "clown" to jump out of somewhere, cause I swear they purchase them from the same place they get the "scary shit" from in the fun houses at th boardwalk, and the carnivals.you remember those, the type that you look into in the fun house and you laugh your ass  off because your so out of shape.

Bless all of you who have stores without "3 way mirrors"...........................have a great day ladies.

Tina, you probably don't need a case manager since you have a fitter willing to go to bat for you. But once you get this taken care of, you might want to think about it for the future. You have a chronic condition that requires at least twice yearly contact with insurance, and there will always be new questions coming up, so it's a good thing to have somebody able to hand-carry your requests to completion. Case managers are for people with complicated medical needs, so you might qualify, and it's a help.

That fear of exercise with LE is hard to get around, but worth the effort. Once we know how to handle flares ourselves we're free to try whatever we'd like (one thing at a time, though, so we can tell how well it works -- or doesn't!) We need to take advantage of the freedom and experiment with activities we'd like to do. Go for it! (We hang our bikes by the wheel under the eaves on a hook, BTW, and our son hangs his in a corner of his apartment bedroom on a hook as well. Doesn't work for our tandems, but it's fine for a single-person bike or a unicycle.)
Binney

So I think you guys will love this one - I was a women's retreat this weekend wearing my cute Lymphedivas sleeves.  Since it was hot and I had short sleeves many of the women asked me what had happened, I would explain.  But there was this one woman who told me how lucky I was to have breast cancer, because that was the easy cancer, and that almost no one dies from it anymore - OMGosh, I was too stupified to answer, and by the time I got my wits back, she had moved on to talk to someone else.  So I guess we all should be really greatful to only have the cancer that no one dies from!!!

Tina, the case manager works for Blue X--hopefully they help you navigate the healthcare system, but Blue X is their boss.

Linda: gotta second what Suzy said--how dumb can you get??? And who asked for this unsolicitied pearl of wisdom? And, if she had a clue, she'd realize how completely wrong she was...

Kira

Yep, Tina, they work for Blue Cross. But they're a constant point of contact for you, and they really can be a huge help navigating around the phone-answering trained chimps you usually have to deal with. (Did I say that?!!) Also, you educate this one person about LE and then you don't have to educate them every time you need anything. And they get to know your contacts, too (doctors, fitters), so if they have questions they know where to get the answers. I've had very good experiences with them. Worth a try...
Binney

Leah, three weeks after my diagnosis, I was at my daughter's wedding, and my SIL's sister is a former student of mine, and she was telling me how sorry she was to hear of my diagnosis, and their mother--a professor at a medical school, a PhD in cytogenetics (whatever that is) said "Why are you upset? They cure that cancer!"

My SIL said "Welcome to my world...."

Leah, Happy New Year, and as Suzy always says, you can't cure stupid.

Kira

Outfield - I'm not really sure what I would have said, because if I had responded immediately, it probably have been counterproductive, and definitely would have been rude. Maybe people like that should be redirected to this site to read the threads, especially those that had no symptoms, found it while small on a mammo and were stage IV.  I think that Pinktober does us a disservice, it makes BC seem light and fluffy, full of smiles and successes.  They never show the woman puffed up by steroids, no hair, no eyebrow or eyelashes - looking like a Lex Luther, or Uncle Fester look alike, or the pain and illness we suffer from all of the different therapies we are subjected to in order to live to see our children and grandchildren become adults. They don't show the tears, fears, depression, pain... that we suffer. They only show the smiling faces, pink t-shirts and camaraderie at the Walks. 

So many people ask me "how are you""is your cancer cured""are you in remission - what do you say, well I'm NED, and I'm on disability because, now, I have dibilitating pain, neuropathy, LE, damaged muscles and nerves in my shoulder from the radiation, I can't pick up my grandkids because I can't trust me knees to lift me or my arm to keep them safe - the need to show the real faces of the disease, it might even generate more money for research, though the donations might be out of pity, but.... Ok I'll stop ranting now.

I'm so glad that I have forum to rant on. thank you all for listening.