Night time sleeve/garment

Hi, cowgal!

Until you can get in to see a therapist and learn both self Manual Lymph Drainage Massage and how to wrap your arm, you might be better off to leave the sleeve off at night and elevate your arm on pillows. There's no point buying garments now until you've had the therapy, because you'll need to be measured for them AFTER the swelling has been reduced. Anything you buy now won't work after treatment.

Any doctor on your team can write you a referral. Just make sure the therapist they send you do is well trained and experienced.

Keep us posted!
Hugs,
Binney

Nothing??!

Suzy, 

We suspend all judgements here--except when we're trashing health care professionals who don't acknowledge LE.

You do whatever works for you, and that will shift with time and season.

You have all the tools and you figure out what works best for you.

I rarely wear hand compression during the day--I wear it more after the fracture, but for the last few weeks at work--no glove. As long as my hand behaves, it works for me.

I posted this blog post about why women don't "comply" with LE home care--and seriously, I was talking on the phone to Binney the other night, and suddenly realized I had to go and start the laborious evening self-care routine and at the rate I was moving, we'd never eat dinner, and we both cracked up--sometimes it's just TOO much.

This is the blog post from CancerNetwork: "More than Pamphlets need to prevent LE"

http://www.cancernetwork.com/breast-cancer/content/article/10165/1787784

Here's a paragraph:

Sadly, education alone is not likely to be enough to motivate women to undertake the self-care routines necessary to reduce their risk. Jane Armer and coauthors from the University of Missouri School of Nursing have analyzed why women don't follow the recommended self-care programs. The main reasons would not surprise any physician; they come down to emotions, lack of time and energy, and forgetfulness. Hence, at least, the need for regular reminders, and for motivational support. 

And I blame tamoxifen too

But, I do wrap every night, and it's because it doesn't bug me as far as insomnia, and it works, and it lets me get away with minimal daytime compression--if there wasn't immediate benefit for me, I wouldn't be doing it.

Kira

Suzy, you have a Tribute don't you?  I thought it worked well for you.  I so want to get a night sleeve but haven't yet because I simply don't know which way to go.

Cowgal, the daytime sleeve is not meant to be worn at night.  It can bunch and shift as you move (and are asleep) and you'd be unaware of the uneven compression changes.

Kira, WOW, you've come a long way since the fracture.

I think we all do what 'works' for us whether it be mentally, physically or both.  I wear nothing at night (on my arm, hehehe).  I wrap every third day for the day and sleeve it the other two days.  Ideally for me I think I should be wrapping every night.  I simply can't seem to get my head around that enought to do it.  That's why I think for me a night sleeve might be the ticket.  But Tribute or ReidSleeve, that is the question.

Suzy, I echo Kira -- no judgements here! We do whatever helps, and we're all awesome. I'm just really glad to see you posting today -- we've missed you! What news on breathing?

Sharon, if I could find a way to move you off the fence I'd do it. Fences are uncomfortable places to sit! You can't make a mistake either way, so put both names into a hat and draw one. Look at what you drew, and if you're disappointed, choose the other one. If not, go with it. Either way, you'll love not feeling guilty about not wrapping every night. Go for it!

Alex, hooray for having everything under control! What a wonderful feeling that is. Enjoy!

Be well,
Binney

My therapist says Tribute doesn't allow for change in arm size and Reid does to a degree.

I like the idea of the Tribute better because it seems it would be less bulky.

The Assisted Devices Program only covers the Reid not the Tribute.  (I know, this should not be a deciding factor but it makes me think well then, get the Reid and if I don't like it try the Tribute.) 

Thanks for the opinions.

From the fence sitter.

A couple of things about the tribute sleeve.  I find mine quite comfortable even on the days I am a bit larger, whereas my day sleeve bugs me more than usual on bad days, so the tribute does accommodate some day to day changes.  Second, the company will alter it once during the first year for free.  They will only take it in, not expand it.  I found the company very responsive. (The first alteration made it worse, and they re-altered.)  In my case, I was getting blisters where the thumb ended. They wouldn't make the thumb longer, but they did resew the thumb, making the seam less bulky.  I sometimes wear my Tribute during the day (like right now), but dexterity is seriously impaired (think oven mitt), and if I do try to use my fingers too much, I sometimes get abrasions at the finger webbing.  Solaris says to fold the top of the sleeve for donning and removal. I found that doing so stretched out the top of the garment and made it harder to don.  So, I just wiggle my arm in.  Takes a bit of contorting, but I prefer it.  Lastly, the first time someone showed me a Tribute, my reaction was "you've got to be joking --there is no way I wearing THAT to bed," and the first weeks, I didn't sleep well. Then I started sleeping with a fan pointing directly at me, and my arm on pillows.  Now, I'd rather sleep with it than without it.  Could just be coincidence, but in the 3 weeks I didn't have my Tribute (during alteration), my upper arm became a bit fuller and achier. Alas,  I haven't managed to get back to my old baseline.  (I was never taught to wrap, and was unable to wangle more LE tx, so my "tools" of management are limited.).  Ks1  

I understand the Tribute can be ordered with zipper, velco or pull up loops, so would appreciate comments on any of these.   I've read some about the zipper, but does anyone have a Tribute with velcro or pull up loops?

Internet ordering is not so hard  - no harder than using these boards! - and there's often the option to find all the product details online, then ring them up and place an order that way. Recommend you print out before you pick up the phone!  If the finance thing worries you, having bank details grabbed etc you can always have just a small amount in a special separate acccount so not much is at risk, that's what I do. It's worth a try as it opens up a whole world of cheap flights and stuff as well. Not quite sure about ordering from international sites though, So far I only used UK sites....

I think the Tribute is comfy enough and I sleep well once I get to sleep.  The only problem is I am waking up about 5ish and having to come out of it thanks to the warm flashes from the Femara.  I am having some pain under my arm though and I know I have it on right but....I have found that if I turn it just a little bit more it feels better.  So maybe it is a the seam cutting in and causing the pain. 

I want judge you either.  Still doing nothing during the day.  If hubby is home I will get him to wrap me.

I was told the zipper was a pain in the butt and that the Velcro wouldn't help with my frozen shoulders.  I was told the pull loop would help but I haven't gone that route yet.  I have discovered Advil is helping my pain greatly.  Good luck

Hi, Valerie:

I have had two different people plus my mom mention the news story you reference - and I have told them all it's old news.  I have no idea why the media has decided to pick this up.

I don't like having LE but I would have done things the same way.  My cancer was invasive - I needed to know, as much as I could, about where it was, and what it was doing.  In that news story, they are pushing less surgery and more chemo and radiation, which has it's own set of side effects.

Honestly, if you have cancer you can't win, as we well know.  There are all kinds of different treatment options and they pretty much all suck.  SO, I just smile and say, "Yeah, I saw that - interesting!", because nobody really wants to hear the truth.  But I do relate to you on the pissed off part!!!!!

I don't look back and question what I did...too late for that.  I just try really hard to look forward and enjoy my life.    Some days I'm more successful at it than others! 

KC, I'm so sorry! Very scary stuff, and being sleepless sure doesn't make it any easier. So glad you've been able to manage the LE throughout. Hoping for answers for your DD and a real ease to the crisis your family is dealing with.

Hugs, prayers,
Binney

KC, I am so sorry about your daughter's troubles - hope she is better soon, and you are both able to be at home and get some rest!  There is no resting in the hospital, particularly when you are the caregiver.

Take care and let us know how she is doing.