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Topic: Help! Mummy on the loose!

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 16, 2006 10:45AM

PJB wrote:

Well, I got my arm wrapped for the first time today (so pardon the typing). Got a sleeve to wear over the weekend and will go back to the PT on Tuesday. The massage seems pretty simple but I'm afraid I'll do it out of order or backward or something and make things worse.

If I have mild LE, is there any chance I'll be able to drop the sleeve sometimes? It's 100 degrees here about 5 months a year... I'm not looking forward to it.

Thanks,
Paula

Update - Everyone at work thought I'd broken my arm, I had so much bandaging. Can you really learn to wrap it yourself at home?
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Posts 31 - 60 (60 total)

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Jun 26, 2006 10:46AM brantan228 wrote:

Okay i am scheduled for my very first Therapy session Wednesday Do they wrap you the First Day PLease advise
Thank You
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Jun 26, 2006 11:48AM Binney4 wrote:

Great! It'll be good. Usually you could expect to fill out lots of new-patient papers, get measured, answer lots of questions -- and then maybe get a massage and a wrap. Other therapists start the massage and wrapping on the second day. Either way, take a list of questions with you and don't be afraid to ask about anything that concerns you.

You also asked about how many therapy session, yes? That varies from person to person and therapist to therapist. Mine insists that 18-20 sessions are necessary over no more than 5 weeks time in order to "retrain" the lymph system to open and use new (but, sadly, inferior) lymph pathways. Other therapists limit therapy to 2 weeks. Depends on where they were trained and what your own situation is. (Also, I suspect it depends to some extent on your insurance.) The important thing is that you should be satisfied that you've gotten the LE under control, that you know how to keep it that way, and that you have someone to go to for answers to any questions that arise as you move forward.

Let us know how it goes Wednesday -- we'll be thinking of you, for sure!
Binney
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Jun 26, 2006 12:49PM mags wrote:

Hi Ladies, you mean something like this Robin?



I am now just wearing a glove during the day. Supposed to wrap at night but it is just too hot. My fingers still aren't back to normal but almost.
Hugs
Mags
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Jun 27, 2006 06:38AM inspiewriter wrote:

Quote:
Okay i am scheduled for my very first Therapy session Wednesday Do they wrap you the First Day PLease advise
Thank You



I had to order my own bandages, so the first day she just measured and went over precautions.

Then I went back 2 weeks later and got wrapped.

and Mags--*exactly* like that.
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Jun 27, 2006 10:04AM brantan228 wrote:

Thank You all so much for answering my Questions I will try to get on here tomorrow Night if not I will be on here thursday

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Jun 28, 2006 06:23AM inspiewriter wrote:

Quote:
Thank You all so much for answering my Questions I will try to get on here tomorrow Night if not I will be on here thursday



Let us know how it went!!
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Jun 28, 2006 05:56PM brantan228 wrote:

Well I got through it. it was like Binney said alot of paperwork asking and answering questions she measured my arm and showed me the wrap They are going to use. I start treatment tomorrow and will be wrapped then I have to go twice a week for 4 weeks right now but my insurance approved for a total of 60 Treatments if needed My lower arm is bigger than my upper arm
Thank You all so much for helping me
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Jun 28, 2006 06:23PM Binney4 wrote:

Sounds good, Brantan! Thanks for the update, and welcome to the exclusive ranks of the Wrapped Wonders (NPat's name for us all).

Time to get those snappy answers ready for all the curious on-lookers who will ask what in the world is wrong with your arm. I'd love to hear everybody's ideas on what worked for you. (I used the tried-and-true "You should see the other guy!" line on one man and he promptly told me he couldn't imagine anybody else looking worse off than me. Hmmm.)

NancyM (who is not currently typing because she's recovering from an infection in her arm and also planning for a bit of a get-away, antibiotics in hand) has a great idea. She says everyone who asks about her wrapped arm should have to tuck a dollar bill into the wraps. Belly dancing LE style -- we could all be rich women! (Well, doggone, if they're gonna stare they oughta pay!)

Brantan, let us know if we can help in any way. It can be a bit of an adjustment and we're all here for you.

It'll be good!
Binney
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Jun 29, 2006 05:14AM inspiewriter wrote:

I am getting my sleeve this morning!!! Can't wait to unwrap these bandages.!!!!

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Jun 29, 2006 05:16AM inspiewriter wrote:

Oh, and for snappy answers, I had a great one. We had an employee recently let go--and she seems a bit unstable. I told people I "met her in a dark alley" and got lots of laughs.

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Jun 29, 2006 07:31AM brantan228 wrote:

I have been keeping my arm propped up in a sling when I was out and people would ask what happened I told them my husband made me mad and I had to take care of him.
They just laughed and walk off
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Jun 29, 2006 07:35AM brantan228 wrote:

Thanks Binney I wish I could have found this site when I was fighting Breast Cancer It would have been nice to discuss this with someone who has gone through it also

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Jun 29, 2006 07:56AM inspiewriter wrote:

My therapist told me one woman got sick of being asked by strangers and told a woman in a store she'd been attacked by a tiger. LOL

Other good come-backs: fell off a trampoline, I was that girl on the news last month who got attacked by a shark.

Juat got back with my new sleeve and glove--so much better than bandages!!!

woohoo!!!
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Jun 29, 2006 08:55AM inspiewriter wrote:

just found out I have be rebandage at night until I get some other kind of night sleeve.

<heavy sigh>
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Jun 29, 2006 10:40AM Binney4 wrote:

Ooh, ouch! That was a nasty discovery, Robin. Sorry it happened that way. My husband made me a bandage winder awhile ago from an inexpensive cordless screwdriver. Zips them right up all neat and nice in the morning (well, as neat and nice as they get when you're already sick to death of them.)

Brantan, bet that answer shuts the curious right up -- nobody'd want to mess with you! Your husband must have a great sense of humor too. Curious about using a sling when you're out and about, as my therapist always wanted my arm moving as much as possible while I was wrapped to encourage lymph flow? The thing sure does get heavy, though -- yikes!

Robin, I love the "I was the girl on the news last month..." line (can't use a shark here, though -- I'll have to go with a mountain lion.) I can imagine people wracking their brains trying to remember the story, then pretending they do. That could really be funny!

A question for everyone: do you reuse your finger gauze?

Binney
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Jun 29, 2006 02:28PM inspiewriter wrote:

Quote:


Robin, I love the "I was the girl on the news last month..." line (can't use a shark here, though -- I'll have to go with a mountain lion.) I can imagine people wracking their brains trying to remember the story, then pretending they do. That could really be funny!

A question for everyone: do you reuse your finger gauze?

Binney



Yeah, they pretend to remember. . . because there really were stories recently about shark attacks. . . LOL

I have gloves, have never wrapped fingers.
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Jun 29, 2006 02:41PM sccruiser wrote:

Quote:
Welcome, Grace! If you start a new thread you'll get plenty of stories. Of all the women who've talked about it here, I think I only remember a couple (Amryann is one) who got a prompt diagnosis and referral from their doctor. Do try a new thread -- this one's getting complicated!




Thanks for the tip, Binney.
Could you give me another one? How do I start a new thread? I'm pretty new at this as you can see!
grace
One must still have chaos in oneself to give birth to a dancing star
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Jun 29, 2006 03:07PM Binney4 wrote:

Okay, let's trade. I'll tell you how to start a new post and you tell me how to do that neat "quote" thing. Never have figured that out.

To start a new post, go back to the Lymphedema Concerns page that lists the titles of all the threads. Along the top of that page is a line that says:
Open discussion>>>LE Concerns Post Previous Index Next Expand
All you have to do is click on "Post" and then a page will come up that allows you to title a new post and write out a message, complete with all those expressive little face thingys. (You can tell I'm a computer genius, right?!?!) Somewhere at the bottom you'll find some boxes to check if you want a signature, preview your post, etc., and also a place to click "Send" or "Continue" or something. So you click on that and then you can see how it'll appear and make any changes in an editing box below it. Then just send it off when you're ready.

Hope that makes sense. By the way, I don't know what all the other boxes next to the one that says "Post" do either, and I'm afraid to experiment. One day when I was just trying things out I managed to delete my back button and had to call tech support, who put me on hold until they could stop laughing.

So perhaps I am not the best person to ask....
Good luck!
Binney
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Jun 29, 2006 03:54PM DoreenF wrote:

Here's how to quote a part of someone else's post ...
reply (not quick reply) to the post you want to quote....

Select quote from the Instant UBB Code area (the middle under the box you type in). this will add some tags w/ blank space between the tags.... [ quote ] [ /quote ]
scroll down to the post you were viewing and copy and paste the text you want to quote into the blank area between the tags
Quote:
put the quoted text in between the quote] and the [/quote



the easiest way to copy and paste - is to
1) highlight the text with the mouse - hold on the left mouse button as you move the mouse - it will highlight the string of text
2) press the ctrl key and the c key at the same time (this copies)
3) go to the blank space between the quote tags -
4) paste the copied text - press the ctrl key and the v key at the same time

There's several other ways to do this ...
Hope this helps you to "quote"

Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 29, 2006 04:04PM sccruiser wrote:

Oh Binney,
I almost peed my pants. your post made me laugh cuz i'm about as tech savvy as you are! it took me a while to do the quote thing. i kept having to preview my post and cut and paste. so here's what i did. i first copied what i wanted from your post into mine. then i typed what i wanted to ask in response. but when i previewed it put my words in the quote box. i deleted them and then put them before quote. once i got your words into the quote by themselves, then i moved my remarks down to the bottom. i know there's an easier way--anyone else out there care to tell us how to do this?
thanks for your help in starting the new thread. i'll give it a try!
grace
One must still have chaos in oneself to give birth to a dancing star
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Jun 30, 2006 05:46AM andys wrote:

Hi binney -
I do reuse the finger gauze, but it doesn't last as long as the stretch bandages - I wash it in a net bag, of course, and dry it already folded in half. But I seem to get pulls in the gauze after only a couple of uses. I've found that alternating the order I use it (little finger to thumb one time, thumb to pinkie the next) seems to allow me to reuse even a snagged bandage one or two times. I order my bandages from a place that has an "arm" lymphedema kit, and they always sell about 6 times as many finger gauzes as anything else (and I need them).
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Jun 30, 2006 08:53AM brantan228 wrote:

Well I am a Wrap Wonder I was wrapped yesterday My session took 1 1/2 Is that normal She did the message first and it did feel good then she put me on the pump for 30 Minutes then we wrapped It is a weird feeling But I do have a problem When I got up this Morning It had all came undun My arm was halfway out so I had to undo it completely I looked at the pictures on here and the ones on this link http://www.sperience.org/bcjarchive/michelinkaren.html but my fingers are not wrapped So I am trying to do it on my own until Monday when I go back
Binney4 My Husband Has a great sense of humor We hhave always had that kind of relationship he does that to me also I love to brag on him He was the first one to know After my Lumpectomy That I had Cancer The Doctor told him first He told me in the recovery room we cried together he was there crying with me when I had the Partial Mastectomy and lymph node removal and he cried when I got my first Chemo treatment It was kind of Funny I am Joking with Nurses and making them laugh and hubby is there wiping tears.
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Jun 30, 2006 11:22AM Binney4 wrote:

Okay, Doreen and grace, here goes.

As I understand it I punch on the word "Quote", right?
Quote:




Ta-da! I got the little square parentheses deals.

Uh. I can't seem to highlight anything in your post, Doreen. Maybe it's because I don't have a mouse with a left side. Or maybe it's because I have an iMac instead of a real computer. Or maybe it's because my ctrl key is in ctrl of the whole thing and doesn't intend to let me wrench ctrl away from it.

Rats!
Binney
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Jun 30, 2006 11:38AM Binney4 wrote:

Hi, Brantan,
Sounds like a good first therapy session. Not everyone does the pump treatment, which would add some time to the therapy, so, yeah 1-1/2 hours sounds about right.

All through therapy I kept thinking of Piglet and Winnie the Pooh, the part where Piglet's sweater is "unknitting" itself, and he shrieks, "Pooh! I am unravelling!" My therapist told me about an older patient who was a biker, a Harley fan and a real character. They had a heck of a time trying to wrap her well enough so she could ride home without the bandages unravelling behind her, long streamers of short-stretch waving in the wind. Finally covered the whole thing with a leg-size stockinette tube, and after that she was fine.

Can you call your therapist and ask her what she'd like you to do over the weekend? Wrapping requires gradient compression that takes some practice to get right, and if the compression is wrong it's likely to do more harm than good. She might want you just to leave it off until she sees you next. Just a thought.

You're a rich woman to have a husband like that! Hope he's going with you to therapy and learning along with you. Sure helps to have an extra set of ears and eyes when there's so much to learn.

So glad you liked the massage -- we need a few pleasant compensations for dealing with all this!
Binney
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Jun 30, 2006 11:48AM fancy2 wrote:

Quote:
Here's how to quote a part of someone else's post ...



You're right, Doreen, that will work. There's also a "Quote" button right above the post. Just click on it and the entire quote will be repeated, inside the quote box. If you don't want to repeat it all, hilight and delete what you don't want.
12/05 ILC 1C NX M0 2 yrs and counting Dx 12/16/2005, ILC, 1cm, Stage I, Grade 1, ER+/PR+, HER2-
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Jun 30, 2006 01:05PM Binney4 wrote:

Oh, ho! Alright, this time I'm trying Fancy's "backdoor" into the quote process. I clicked on the QUOTE box above Doreen's post, and I've now got her entire post captured between those square parentheses things. AND!!! I can highlight in here, too, so maybe this is gonna work, if I can just get some of this information to stick in...
Quote:
...the blank area between...


...my ears.


Still, for me,
Quote:
...the easiest way to copy and paste - is...


...with crayons and Elmer's glue.



Quote:
Hope this helps you to "quote"



YES!!!

Thanks all!
Binney
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Jun 30, 2006 01:28PM DoreenF wrote:

WooooHoooooo.... Binney... you did it!!!! Yippeeeeee....
the ability to quote makes replying to quotes so much easier...

And you had me Laughing Out Loud at your replies... crayons and elmers' glue are definitely the simplest tools... too bad we can't use them in the computer...

Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 30, 2006 01:40PM brantan228 wrote:

I called her she was with another Patient and never called back I tried wrapping by the pictures you guys posted and the info packet my therapist gave me It looks the Same and feels the same Maybe I will unwrap it and do it again On Monday so she can see if I know how to wrap it Right
Okay Is this too soon or am I just Imagining things One of my biggest problems with my swelling was the pain in my shoulder blades hurting Last night I had no pain for the first time in a month today when the bandages came off my shoulder starting aching again Does the therapy work that fast?
Hubby is going with me Monday of this week and both times next week

Too funny about WInnie The Pooh and the Biker Lady You sound like you have a great sense of humor also
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Jul 1, 2006 06:16AM inspiewriter wrote:

Hope you all have a great weekend!

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Jul 2, 2006 09:58AM sccruiser wrote:

Congrats Binney!
thanks for the laugh again. Now I have to go change my undies LOL
You are too much. I too liked the crayons and Elmers glue, but think of all the paper we wasted making changes! now we can do it with one lil ole delete key!
take care,
grace
One must still have chaos in oneself to give birth to a dancing star

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