What's wrong with your arm?

Tell them it swelled up really badly after the last person asked you and you punched them...

I've found that most people don't ask.  I have a job that puts me out there ... I stand in front of people and have to shake hands and most don't ask.  Please don't let this be the reason why you don't go ... and I think too it DOES get easier with time.  People say stupid things ... we've all heard about 'em concerning our bc and now about the sleeves and gloves ... knowing that some people will say stupid things kind of prepares me for the worst, although sometimes there are zingers I wasn't expecting. 

GO!  Don't let lymphedema steal this opportunity away.  It already has taken so much.  When people ask me about my gloves & sleeves, I usually respond, "I have complications due to a surgery."  Most don't ask any more questions.  If they say something stupid ... I really like Nordy's line!    I think it being in the fall will help too ... I am dreading summer and not being able to hide most of the garments under my clothing.

Don't let lymphedema steal more from you more than what it already has!

Some adults ask me what it is & that they think it will help them with issue they are having.  When my students ask me, (k-3) I just tell them I had surgery a few years ago & that it hurts & the sleeve makes it feel better.  That usually takes care of it.  NJ

Cookiegal-I agree with everyone above.You shouldn't let LE steal this opportunity away from you and your DH. Many times a day at work, I respond that I have complications from surgery. That seems to satisfy the curious. Recently I started wearing a black garmet and I've found I get less questions. My son says that it looks more like something people wear during sports competition, maybe that's why less questions. Anyway, I hope that you go and enjoy!!!!

Most of the time I just say it's not an injury, then indicating the garments, tell them they are to control edema or swelling. Most folks are aware of and can understand the need for support hose, so I just let them think along those lines.  Like Omaz said, the way you comment with finality and then change the subject will most always keep people from probing further.

Please don't let wearing compression garments keep you from doing something you love! 

Hi, Cookie:

I can so relate to your dilemma, and I have a bit of a different viewpoint than the other wonderful ladies.  I think they make excellent points...but being only a year out from a bmx and less than a year out from LE diagnosis, I have a different opinion. 

If you don't think you can handle it emotionally, mentally, etc., to be at that event with compression garments on, don't go.  You've been through hell.  There's nothing wrong with taking some time to recover.  You can always do the event or similar events next year.

On the other hand, the event is in the fall.  That's six months away, at least.  You may feel very different then.  I was so raw last year...I could barely keep it together, and when someone would ask me about my compression garments, I felt like a deer caught in the headlights.  Now it doesn't even bother me, and I am currently walking around with black kinesio tape striping (and I mean about 10 stripes) the whole length of my Casper-like arm.  And I'm wearing short sleeves.  And I don't care what it looks like or what someone asks me.  I just look at it as a way to do some LE education for the unaware masses.  But I've had time to deal with everything, and am in a much better, stronger place than I was in say, August of last year.  August 2010 I was a total freakin' hot mess.

Do what you feel like you can handle.  And then don't feel guilty about it, and don't feel like you're not strong enough, not mentally well enough, etc.  You're just trying to recover from and cope with some really bad sh#t.  So if you need a break, cut yourself one and don't feel bad about it.

Just my opinion!!!!  Love you guys.

Suzanne

P.S.  Had to add that Nordy's answer about swelling from punching people had me rolling.  Why did I never think of that????? Brilliant!!!!!!!!!!!

....another thought, you can always get one of the funky lymphediva sleeves OR that other company (someone help me out here) that makes the sleeve covers and go that way!

In all seriousness, I usually just tell people, "I have lymphedema as a result of breat cancer treatment."  That simple. Sometimes they just look at me and say, "Oh." Sometimes they ask what lymphedema is, so I educate them on it... but usually I get the, "But you're so young!" (I'm not... really, but I have young children and I am young(er) in the whole breast cancer scheme of things). It usually ends up being a conversation about breast cancer rather than the lymphedema. But it is interesting that SO many people will ask me "when" the LE will go away... I wish... 

cookiegal - I just had a thought ... hope it helps.  The first time I went to the gym with my gloves on ... I was so self-conscious, felt incredibly embarrassed and was a complete basket case.  I can't remember what I said when people asked about the gloves ... all I wanted to do was cry ... but then my class started and I was able to focus on the movement instead of the gloves.  I don't know what has happened ... maybe just time ... but now when I go to the gym I don't think about.  Yes, people still look ... but I just look at them at smile.  It doesn't bother me anymore.

 Maybe what it is going to take for you is just a little time ... the first time will be tough ... but once you get over the first day, the first session ... the next time will be a little easier for you.  You're going to be there with someone who loves you, someone who this is important to ... focus on those things and try not to focus on the gloves.  We're so much more than our lymphedema garments ... we still have personality, we still have love & compassion ... we're so much more and we have so much more to offer than just our outside appearance & our gloves and sleeves.  Focus on you as a person ... what you have to offer ... who you are and not so much the external things.  I'm preaching to myself here!    Some days I'm able to do it better than others ... I like the black idea ... black sleeves and black gloves ... that would be cool!  I know juzo makes a black glove and farrow now has a black glove ... I'm not sure it is long-fingered yet ... but black gloves and black sleeves could make a nice outfit even better!   

Much love to you!  We so know, we really do!  [[[[hugs]]]] 

So I reported it, to and POOF! it's gone.

Leah

cookiegal - If you can wear pink kinesio tape on your arm at work octopus sytle ... YOU CAN DO THIS!  You really can! 

hugs and love!

dh

Well, Cookie dearest. In addition to all of the plans above.... I have one additional suggestion.

Give yourself permission 'not' to go. Give yourself permission to go -- and attend what ya want.... making that decision on an hour by hour basis. You seriously aren't required to show up for every single event, every single hour. Try not to think of it as a totally black & white option. There are a gazillion shades of gray that could make this work.

Give yourself space to 'go-with-the-flow' rather than all or nothing.

So my suggestion?

PHARMACEUTICALS!!!!

I have a prescription for Atavan -- my miracle drug (sp?). Makes all of the difference in the world, with how my brain works. Literally takes the edge off. When I first ventured out 'fully' garbed with naked compression sleeve/gauntlet last summer to yoga et al. I'd take a half a pill..... and instead of coming to tears at sincere questions, I let the intrigue roll off my back, with the support of my prescription.

Seriously. What the others are saying, about having a 'stock' sentence is gold. I practised mine.... for kids during performance I say, "I have a weak arm and this is my power sleeve that makes me stronger." Over & out.

Love ya, gal.

He wants the best for ya, ya know he does. I know he does.

Cookie - I can't wear the silicone band at the top either... but Lymphedivas makes the one that does not have silicone... although, I guess it is still technically a band - but it doesn't cut into my arm like the silcone dotted sleeves do. But you know your arm best and you will do what is best for YOU!!! Don't forget to take care of you!

Do you think you can turn the juzo with the band inside out?

I just love Faith's recommendation of giving yourself permission that any decision you make is right.

We don't need any more stress, or shoulds--just do what feels right and give yourself permission to change your mind at will.

Love it.

Kira