Diagnosed today and feeling gutted.

@lou23 it really does suck, sorry. I always say to anyone new, DON'T GOOGLE IMAGES, the photo's are of extreme cases that were not diagnosed or treated for years. Caught early LE is managable.

There's an entire thread on what people have said when asked what happened, what's wrong, what did you do to yourself or even why are you wearing that thing on your arm. I'll bump it just for you.

sometimes I don't mind telling and educating people about my sleeve other times I just say it controls swelling. Sometimes I'm in a bad LE mood and people ASSume and say, you've got carpel tunnel and iIl say,yah something like that.

Tonight I'm going to dinner with 12 people that will be asking around the table and because everyone is curious. the table will become dead silent once someone gets brave enough to ask. They all want to know cause people are generally nosey. I'll let you know what I decided to do. Maybe shark bite tonight or maybe sex accident. lol, or maybe the truth.

For sure I will be the centre of attention so I'm preparing myself for anything. I can eat eloquently with either hand and sometimes I just put my LE hand in my lap unless I'm cutting food. I'll see how my mood goes

I decided to get sleeves & gauntlets in patterns (tattoo, patchwork, leopard)--by “outing” my LE I’ve not only taken ownership of it but am raising awareness of a disease about which even some doctors are clueless. (A friend just had a bmx with 3 nodes out per side--her surgeon says she shouldn’t worry--since “it’s treated with compression, a blood pressure cuff should be fine” and “with needles, all you have to do is prevent infections.” (It’s precisely the loss of nodes that increases LE and in turn, vulnerability to infection). At least two acquaintances with LE (both musicians, one a Grammy-winner) went out and bought sleeve-gauntlet sets to match the colors of clothes they wear onstage.

It’s time more famous people with LE, besides Kathy Bates and John McCain, brought it out of the shadows. (There’s been speculation that Hillary Clinton’s increasing choice of ever-looser jackets might be due to truncal LE from nodes damaged during abdominal surgeries. More people have LE than have MS, AIDS, Parkinson’s, and muscular dystrophy.......COMBINED!

I didn't know John McCain had it either.

Hugz: how was your dinner? I was at a luncheon yesterday,, wearing my blue/white tie-dyed pattern sleeve, and got a few comments/questions. Apparently I was in an educating mood yesterday, so I yammered on about it !!

I probably yammered more than they wanted! One person actually said: Wow, you know a lot about this. Well, yeah,,, I have to live with it the rest of my life. I politely said: well, it's a chronic condition like diabetes and hypertension,,, have to manage it for the rest of my life.

Lou, hopefully what's next will be only GOOD! Not sure about corsettes, but at the bottom of this page are links to lots of other options for truncal lymphoedema garments--some of them actually reasonably comfortable!

http://www.stepup-speakout.org/breast_chest_trunck...

Getting used to this is sort of a life-long process, but we do get better at it all the time. Hang in there!

Gentle hugs,
Binney

When McCain was running in 2008, much was made of his facial asymmetry compared to 2000. In the interim, he had been diagnosed with melanoma and had radiation to that side of his face--which is “fuller” and less wrinkled than the unradiated side. Though he never used the word “lymphedema,” many articles on LE did. I think he fears mentioning it lest it impact the closest Senatorial election race of his life. His general election opponent is not playing the “age” and “health” cards the way his primary opponent (a physician) did--but the issue is still fresh in voters’ minds.