I wish someone could explain why I have to smile about this

I hear ya!!! The whole thing sucks. It's amazing how strong we can be during treatment and then somehow the weird crap we have to deal with after it's supposed to be over is very hard for us!! You'll be able to live your life though. I was the exact same way you are and if I can learn to live with this then you can too. Trust me! I was pretty devastated at first... Hang in there!!! HUGS

Hi, Susan - thanks for raising that topic. I've not had surgery yet but since I have a positive node, I know that I'll be dealing with ARM sooner or later in an effort to avoid too much trauma to that area. 

One of the side issues that's made all this even harder than it already is, has been the expectation of a lot of professionals in the breast center that I will 'grow through this journey, and come out of all this a better person' than I went in. The surgeons as well have had this attitude of, 'well, what's more important - lymphedema or your life?' 

I don't buy all that garbage about this being a growth experience - I am a healthy, fit, previously happy, generous, fairly enlightened woman and I really don't need to 'learn the lessons your body is trying to teach you through cancer' (a direct quote). Furthermore, if treatment is going to turn me into an invalid or a deprive me of my abilities, I'm not entirely positive I want treatment. 

I really resent the notion that we should all just accept whatever it takes - because I think that allows the medical establishment to shirk its need to find more humane ways of treating this disease. 

It's too bad that Komen and the like aren't focusing on better treatments, since those seem a lot more likely to be found than a cure. 

At any rate, I do hear your pain and frustration and want you to know that you're not alone. I think it's healthy to be angry about this. Oh, and for what it's worth - the LCSW who leads the support group nearest me is one of the worst offenders in terms of 'this is all happening for a reason. Embrace the journey, smile and accept it, blah blah blah.' No one would say that to people with melanoma or brain cancer.

what, I hate is how many times I, am asked about my arm!! Liz

iwannaseeyoubebrave - Here's a link to a webinar that you might find helpful. I've not viewed it yet but it's produced by Johns Hopkins so should be fairly reliable. I've posted another one in the lymphedema section as well. I hope these help.

LE is one of the SE that the rest of the world doesn't seem to know about. I was aware of it long before dx. because a long-time client has it and we'd discussed it quite a bit. It is the pits, frankly, and I'm sorry you're dealing with it.

http://bit.ly/LymphedemaVideo

Thanks a lot for the input, Liz. I'm glad the video was worthwhile. I'm planning to watch it this weekend and am registered for the next one in the series on 12/3.

SusanSnowFlake, I do know how you feel. Some days I am ready to throw in the towel and just hide under my covers, then other days I am almost euphoric at being able to enjoy a beautiful day. This disease makes me feel crazy, drains my energy, my checkbook and my resolve to lead the healthiest life I can. There are days I can't even imagine smiling. The only thing I can say is that after 3 years of living with lymphedema, the days that I want to smile far outweigh the days that I don't. Please feel free to message anytime.

Iwannaseeyou - I'm glad to know it was worthwhile; thanks for letting me know.

Some days (weeks?) it seems to take a Herculean effort to stay out of the black pit, doesn't it? I hope you're able to find a way to shift your mindset and deal with the situation in a way you can live with more comfortably.

I would too, sandcastle. I have a friend who does ALL the time (at least during the day) and it's been very eye-opening hearing about her experience with LE. Why is this so downplayed by the medical world?

You know, Glennie, that makes a lot of sense; they can't control it, so let's pretend it doesn't exist or doesn't really matter. Thanks for the insight.

I suspect that if more of them had the issue we'd see a lot more concern for the issue.

I'm really fortunate in that my BS had breast cancer a few years ago, so she is super empathetic regarding all of these issues. She's very open to new approaches that minimize the risk of LE, which I appreciate tremendously. It's too bad they're not all like that!

Good points, SpecialKay (as usual). There are numerous factors that feed into the situation and you've hit a couple of them squarely on the head.

I had 2 surgeons pretty much assure me that due to my size and fitness level I would be very unlikely to develop LE - and then pretty much brushed it off and resisted (strongly) any further discussion of the topic. Since it's a huge concern to me, that was really unnerving. I walked away from both of them, although I liked one of them quite a bit otherwise. I just don't think it's wise to put one's well being in the hands of someone who dismisses major concerns and invalidates one's feelings.

I didn't fit the high risk profile either. And when I felt "puffy" and went back to BS, he said I didn't have it. When I saw my MO a week later, he said I did. I'm sure my MO has seen it a lot more often than my BS. 

and I have not seen my BS since then.  I notice that many continue to go back for checkups or whatnot, but I am not having recon, so not sure why I would go back to see him. 

My plastic surgeon got in touch with my breast surgeon to get me in with a LE specialist after complaining about shoulder pain and tightness in my upper arm and breast. I told her point blank that I don't think that's the issue. I'm glad she got the ball rolling, since I was wrong. I have my first pt next week and will learn to wrap. I told my kids I will be their new mummy. Bad joke of the day.

I hate all the collateral damage from treatments. I really try to manage the best I can and have a good attitude about it. But it sucks!! I need to wear a sleeve daily now and the extensive rads have turned so many muscles into jerky. I do love my LE therapist, though. I never see my surgeons for follow up. I rely on my MO. She's great, too

One day at a time.

I know how you feel, Susan. It IS really hard on us. I'd say that having LE bothers me more than losing my breast. The sleeve and glove every day, the bandages at night, the massage, manual drainage, PT. It's like having another disability, which I really do not need. (I've needed crutches for walking since age 13.)

We all do the best we can. I've found that custom sleeves and gloves work better for me than off-the-shelf. And my BF helps me with my bandaging on nights we spend together. But this adjustment is really hard, and we don't need people who don't have to do it telling us how we should be feeling. Hope this helps.

Amy