GRRRRRRRRR I HATE LE..........

My truncal LE was aggravated by radiation fibrosis & scar tissue. Now that the PT has worked breaking that up, controlling swelling with MLD is much easier.

What amazes me is a lecture I saw by a Stanford professor. Wish I could find the site again, but he said the average doctor has a total of 15 minutes education about LE in his 10+ years of medical school. So of course they're not familiar with it. "None of us will get that", right? Sort of like none of us will get CIPN - chemical induced peripheral neuropathy - but 30% of those who do never get any better.

Sometimes it's hard for me to determine if the tingling in my fingers & hands is just the everyday neuropathy or the LE moving along. Sorry for the rant.

40%????  OMG!  That is outrageous that it is so high and so many know NOTHING about it.

Carol, I also read that developing cording after surgery increases your risk too. I had cording and a seroma! So even though I only had SNB and 6 nodes removed, I think those things increased my risk. And I probably should not have started doing push-ups again,,,,,

Carol,,, I thought I would get back in shape slowly,,, by doing pushups against the kitchen counter!  I thought that was slower than the floor,, which I would do on knees!   Wrong!  My LE set in not long after I started doing them.  **sigh**

You are great with the weights!! I have no patience for starting with 1 lb weights after being able to lift much more. It sucks!!! And the gym I belong to, has no low weights,, they start at 5 lb.  I was doing some low weights at home, but I got so bored. I am doing gentle yoga now.  And gardening! So far, so good,,,,,

edited to add:  I really must walk,,, need some cardio,,,,

Thanks all. I am just very pissed off about it all.

Sandcastle--I thought I was the only one in NJ wearing a sleeve!!!! LOL Where in NJ are you? I'm in South Jersey, Medford actually.

Honestly I wear it at home in the mornings and then remove it while Im out. I'm getting new garments tomorrow, so maybe I'll feel more comfortable wearing them in public more. I have a black glove now and think I'd prefer a beige color instead and she ordered me a pink camo sleeve from lymphedevas, so I can look badass---NOT. I do wear them out just not to social events, or when I'm out with my daughters. I know I should as I am paranoid about it getting worse. And now I'm worried about the one breast being larger than the other.

Why do we have to suffer while others (and I mean non BC people) can go about their daily lives not worrying about getting their sleeve wet and taking it off and on, making sure its just right. Just want to be back to my normal self, and by normal I just mean no LE!!! I know I should be grateful to be alive, but I truly would get chemo again than go thru this FOREVER!!!!!

I have to chime in... I'm in NJ too! Currently wearing a lymphadive sleeve and gauntlet. not happy. But not miserable, that was last week!

thanks! It was actually a "seconds" so it was half price!

Hey, guess what: no more itchy feet!!! I'm on Femara now. Not happy but at least I'm not itchy! Thank you for helping me feel sane earlier this month!!

when I buy Diva I always buy seconds...Liz

So my LE therapist told me that the pump is for those that MLD doesn't work for. That the pump takes at least an hour a day, and that you should still do the MLD and wear compression garments.  Also, she feels that you will end up with more LE issue if you have reconstruction.  I did have two little, tiny punch biopsy's by my sternum, on the BC/MX/LE side.  I had a 2 hour drive home from the doctor, by the time I got home I had a lot more swelling in my hand and fingers than I had before the biopsy.  She said that often happens. 

Sandcastle, I get the regular length Diva (my Jobst sleeves are long) in 20-30 compression. I did have trouble with them staying up - then I got the one with the silicone band and I no longer have that problem.

Liz, I think I'm lucky - my LE is very mild...stage 0 I guess.... I've only ever had a little swelling in my wrist. So whatever I do is mostly preventative. I wear my fun sleeves when I'm dressed for work unless I'm in long sleeves then I just use my jobst. I am not sure how I will handle the summer..... I'm thinking of getting a Solaris for nighttime wear and not wearing a sleeve at all during the day if I can avoid it.

My cording bothers me more than the LE at this point. (knock on wood)

Jen

Jen....I use BiaCare for night compression....it is very hard to get through the night with a sleeve....I am also stage 0....but last summer I developed a Blood Clot on my index finger on my LE side.....so I really had to get serious....Liz

Hi Liz, is your BiaCare a sleeve or something else

When I needed a replacement, my insurance denied coverage of a Tribute, even though they'd paid for it two years ago. So like sandcastle, I changed to a Biacare chip sleeve to save a lot of money.  Solaris sells something called Caresia, which is also less expensive than their Tribute, and which comes in stock sizes like the Biacare product.  But Caresia does not have an incorporated gauntlet, and it needs to have bandaged wrapped over it for a snug (i.e. effective) fit.  The Biacare sleeve comes with a spandex over-sleeve, which is necessary to make it fit snug to the arm, and it also has the built-in gauntlet.  I loved my Tribute, which is custom fit, and I find that the Biacare product is bulkier and not quite as snug in certain spots as my Tribute, but that's understandable as it's an off-the-shelf product. Overall, I'm quite pleased with the Biacare, and my experience with both the Tribute and the Biacare chipped foam sleeves is that I can go to bed with an arm that's a mess--achy, tingly, burning...and wake up with minimal or no symptoms. For me it's a wonderful way to get the benefits of nightly wrapping without having to take time to fiddle with the wraps and the wrapping process.

Funny thing, too, is that when I looked into getting Biacare, I learned that the company is located 15 miles from my home. They don't sell at retail, so I had to buy from a mail-order vendor, but I do like supporting local companies, so it was another reason to make that choice.  The folks at Solaris are fine, fine people --I've had the pleasure of getting their help on a lymphedema advocacy project. Both companies have our interests at heart.

Isn't it frustrating that the whims of insurance dictate how we are allowed to treat our medical conditions?  This is a good reminder of the need to call and pester our members of Congress to support the Lymphedema Treatment Act, designed to take some of this garment frustration away.

Well, I caved!!!!  I am so tired of always hearing how bad I need to wear compression garments.  I went for a fitting this weekend with a CMF and bought a bra and foobs.  I wore the bra all day today and already hate it!!!!  Those of you who wear these things 24/7, I applaud you.  The lady that owns the boutique I went to is a 25 year BC survivor, but now has bone mets.  She had on a sleeve and bra and when I asked her how long she has been wearing her garments she told me for 23 years.  Really??  You have got to be kidding me!!!!!