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

whaevah

thanks Cindy! I will ask

purple32

Hi all

I posted the following in the exercise thread, but I always feel like I am hi-jacking. Tis thread seems to be more of "anything LE"  I would appreciarte any suggestions or comments on the following:

==============

I called my fitter . She said she is going to have to get me a custom made glove and sleeve ( Goodbye lymphediva :>( because the  sleeve was tight in the wrist before exercise ... etc etc ... glove cut off circ & made my thumb numb  sorry

I told her i was seeing the LE therapist the day after TGiving baciuse I have  that day off work. She said she took it off too but she will meet me at my appt.         Who is this woman ???!  (What an angel!)
So, in the meantime- no tx .  Pretty concerned about pricing of custom made as well as what INS will cover. ( Custom measured was bad enough  -    that glove  was $380!

Back to square one.  Any tips on custom fit / think it is absolutely necessary ???
In the meantime, I am guessing I should not do any exercise at all.

I just ordered the Lebed dvd.

gmafoley

LE therapist says we caught it in time and I "should" be back to normal (speaking arms/hands) in no time... Only 6 days since surgery so the breast and under both arms/ribs are swollen too...But things are getting better, that is if I listen to the little voice that tells me not to do anything and rest.... I don't like resting ...But when I think about it,  I probably should listen to the voices....

binney4

Gma, those are not little voices you're hearing--they're BIG voices. It's all of us all over the continent shouting "Rest!" at you as loud as we can. And you doggone better listen up, because nobody wants to deal with a mob of mad, hormone-deprived, swollen-armed women! Rest up, y'hear!

Purple, custom garments are often necessary for a great fit. There are several garment makers who offer a range of colors, so don't despair. You do have an angel for a fitter!

Be well!
Binney

LindaKR

whaevah - my advice is exactly the same as Cindy's.  Have your RO refer you to a certified LE therapist, and go with what they say.  Don't buy a compression sleeve without seeing a therapist first.

LindaKR

Purple -  I can't wear off the shelve sleeves, like you, my fitter is amazing.  The custom one makes all the difference in the world.  I had the same issue, two piece, even custom fitted, made my hand swell.  I still have a little, but mostly it's gone with the one piece.  And it hardly took any time to get used to it.  If I have to wash my hands, I can slip my hand out of the gauntlet, and roll it up a little, then pop it right back down.  My insurance paid the same percentage for the custom as off the shelf - 80% until my out of pocket was met, then 100%.  Mine also covered 4 pieces, so I was able to get four of them.  What I did though was get just one to start with, to make sure that it fit right, that I would be able to put it on, and if I could stand wearing it.  After wearing it for a week I called and ordered three more.  They do come in several colors, I opted for 2-black, 1-warm brown and a rustyish-red.  The ones I got were from Juzo.  Let me know how it goes with the glove/sleeve since that's up next for me.  I should have my prescription in the next couple days then off to Portland for the fitting.

I'm going to get a Lebed CD ordered this weekend!  Hold me to it!

Gma - sounds like things are going pretty well for you! And listen to Binney, I believe she's right, we could be a pretty intense force to deal with - so relax this weekend.  And remember I live close enough to drive over there

I hope you all have a great weekend.

purple32

I can slip my hand out of the gauntlet,..>"

But I wear a glove.

Good to know about the colors at least.  Many thanks , and also to Binney.

Linda or Binney can you share a website link to the colored custom made or ?

I am corresponding with Josh about the lymphediva right now. Of course , his primary concern is proper fit. 

Having said that, he did mention the possibility of double compression or tight glove. (Darn  glove IS very tight ) Ladies - dont the glove going over the wrist automatically give sorta of a double compression ? It would surely SEEM SO.

Wish there was a thread for all this on sleeves and gloves/feel like I am  hi-jacking all the time.

THX

sandcastle

purple.....I have ordered from Lymphediva a few times in the past six months......they are great......Josh, has directed me also.....but for me the gauntlet works...I LOVE the colors....I always buy seconds and have been very happy with them......my first was Sunday Picnic....I use that older one when I am cleaning or such....Liz

rockym

I've mentioned that I have swollen middle and ring finger and was concerned because this is on my LE side.  I posted this somewhere else, but perhaps someone here has been though this too.

My left middle and ring finger each have developed "trigger finger."  I don't take Tamoxifen or Als and I'm not sure where this came from.  Chemo maybe?  Instant menopause at 47??  I'm not sure what to do about it yet since it's only been about 2 weeks.  Thought it was possibly lymphedema related, but not so sure now.  It is just a coincidence that it is on my left side?  I was the picture of health before BC, this has to be BC related.  Any thoughts?

LindaKR

Purple - I know - that's why I went with the one piece with gauntlet last time, my LE therpist said I could still wrap my fingers, but if you have to do that you can't wash your hand anyway.  I've found that I can use hand sanitizer with the gauntlet down, it cleans my fingers and dries fast.  So that's my plan for when I get the one piece with glove.  If you get yours first let me know what you think, and what you get.

Rockym - I developed trigger finger on my BC side hand on a couple of fingers, also, my thumb joint kind of disappeared.  The trigger finger went on for about 3 months, then one day just stopped.  I did stretching and some hand exercises that I found on line, I also had a steroid injection for the pain and swelling in my thumb area.  I assumed that it was from the AI, since it is one of the rare side effects.  My thumb joint area really swelled up, they decided that it was a combination of swelling from the deteriorated joint that triggered LE - used massage, and also the injection, had to go to the one piece LE sleeve/gauntlet then, but it's doing well now, though I think the steroid may be wearing off, because the same area is starting to swell again. 

rockym

LindaKR,  thanks for the input.  I've started to take Advil as my first line of defence.  I don't take hormonals so I know it didn't come from that.  I'm glad to hear yours went away.  Funny you mention 3 months.  I've had many strange things happen with my body since BC and many took 3 months to go away.  I told a friend that 12 weeks was my magic number.  I suppose I could get an injection if it hurts too much, but since it's only been a couple of weeks, I'll wait it out a bit.

purple32

 I've found that I can use hand sanitizer with the gauntlet down, it cleans my fingers and dries fast.  So that's my plan for when I get the one piece with glove.

LINDA

I really dont like the idea of so much alcohol ( wash my hands a dozen time a day)  and the drying out effect on our skin----esp. with LE.

Having said that, my local grocery store sells hydrogen peroxide wipes and I have used them when in a rush, now and then.

Not sure if there is a better solution, but I thought i would post this reply to you just in case somebody comes up with one !

LindaKR

Purple - I know what you mean about the acohol, I hadn't seen the peroxide wipes, I'll look for them instead. Thanks

o2bhealthy

I use the 'young living' Theives waterless hand purifier...not as harsh on the hands and not as drying. 

rockym

I wore my sleeve today for the first time in public (other than just at the archery range).  I noticed my left arm looked fuller this morning and when I measured it, it was.  The sleeve looks cool so no one looked or asked.  I don't think anyone gave it a second thought.  The only thing I did notice was that the rubber near the top of the Juzo ws fine when I was wearing it, but when I took it off I could see the indentations of where it was.  I also noticed some crease marks on my arm on the opposite side of my elbow.  They both went away quickly, but I wasn't sure if that was normal.  Other then that, it felt fine during the day.  I hardly knew I was wearing it.

whaevah

LindaKR, thanks for the advice

purple32

ROCKY

Good for you!

I find my sleeve to be ' acceptable ' too- its the darn glove that draws  stares and remarks , and I am currently only wearing an OTC IMakk for now.  Of course, I guess ANY glove INDOORS is odd !

I am a novice here, but I had those marks as well and they faded rather quickly so I think they were normal, but hopefully someone else will come on and confirm.

gmafoley

Rocky and Purple - if the marks don't go away quickly and start an irritation, that is when to worry .. I use a little baby "cornstarch" powder to stop the irritation before putting on the glove - works wonders. Edit : just in the elbow area - don't get it on the upper arm or your sleeve will slide down... 

LindaKR

gma - cornstarch, what a great idea, I'll be trying that today!

gmafoley

Stupid Question - but asking it and reminding people at the same - time:  Grandsons are coming (ages 5 & 2) tomorrow, for thanksgiving.  If grandma is playing with them, I am to make sure I have sleeves and gloves/gauntlet on???? Any suggestions about keeping them off the surgery side?? guess I can wear a bandaid on the shirt over the Boo-Boo to remind them??? Worked after my first BC surgery  I think.. Any other suggestions.

LindaKR

Just gentle reminders, my grand kids mostly live close by, and so I have a lot of experience.  Just remind them, sit down with them, pillows on that side help buffer any accidental tight hugs.  When one of my kids was 15 months old I had my gall bladder out, it was pretty extensive, drains, etc... since my doctor didn't figure it out until, my bile duct was completely blocked, and my gall bladder, liver and pancreas were infected.  She was still nursing at the time, and wanted to sit on my lap, I just kept a pillow across the surgery area, and it really protected me.  Sleeves and gauntlets particularly if you are going to pick up the little one.  I try to avoid lifting my grand kids and instead get down to their level.  Hope some of that helps gma.  Have a great week, and it sounds like you're feeling a little better.

gmafoley

I'm hanging in there LindaKR... Still hurting, but have to remember its only been 10 days since surgery.  Looks like it is healing up nicely, except for the orange peel(LE) skin surrounding it.. LE T is just working on the BP/IV Booboo right now until BS gives ok to work the other... Probably another week.  My trunk feels awefully heavy and no matter what I wear strangles me even when it is loose..  I have some polymem gauze over the scar to try to buffer the sensitivity of clothing touching it. I will be ok and for the moment anyway, I'm not leaking .

proudtospin

Not an expert but when I had surgery years ago, I had to tell my 6 year old nephew that I had surgery (abdominal) and to be careful not to crawl into my lap, he did want to see my incision~~he was at the age where anything gross was interesting.

not!

purple32

Hi gma

I am somewhat of an ' expert' in the area of kids  actually ( dont ask) so I will speak to that as well.

First, I have told my little one about the BOO BOO  since my LX . Every time she sees me she still mentions it  When she does I say :
"thats right ...grandma has a boo boo, but mommy doesnt, daddy doesn't  .... etc etc does not and YOU won't get one either.  This can be important !

I showed her my glove the other day as if it was bandaid and she said " Grandma's boo boo ?" ( she is 2) Their was just no need to explain ... I just said " Yep!"
She knows I dont pick her up unless ' good arm") and  I tell her she has to wait for grandpa or I have her get into her highchair with a little 2 step stool.

One  more thing---- be sure to get and give lots and lots of kisses and

ENJOY!!!!!

gmafoley

I am thankful for all the LE ladies that have been able to make me realize I might need to go to see an LE therapis. For being here for me when I realized it will be a life long struggle... For all the times you were here when someone got a bug bite, burn or other injury on their LE side.   And last but not least, for my family that has supported me and one more day I can watch my grandchildren grow..

duckyb1

""Gave up. Tired of dealing with the bullshit. No one gets it right, and I'm tired of being patient. I had the best, and someone is always screwing up..what good is a great therapist if the assholes who make your custom sleeve just can't get it right......through with them all. Paid my last co-pay. Wish 1 had what it cost me for "nothing". Oh we'll.

gmafoley

Love you Ducky!! Just know I'm here to talk to anytime!!!!

hugz4u

I see we are on Page 187 in the grrr thread. Somehow I think this thread will never die out! Did I mention lately that I hate LE. I think it is creeping into my breast now due to my KTAPE removal disaster.  OK HERE GOES! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR. I feel better for grrr-ing! Thanks!

Beatmon

Boy, do I agree! But I did have a wonderful Thanksgiving with family and then best friends. My best friends 5 yr.old granddaughter frequently lightly stroked my sleeve and kissed it to make it well! Hope that it works.

KittyDog

Hope everybody had a great Thanksgiving.  It was a bad week for my family. My Aunt passed away Sunday from Ovarian Cancer. She lived 6 weeks from DX.  I have spent way to many hours in the car and eaten food that was way over my normal salt intake.  My legs show it, my hand was puff and the top of my arm was too.  Currently just the legs and trunk are bad.

Going to send my PT an email and see if they can work me in.  Plus it time for new garments.