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

GmaFoley

Ladies, sorry to interrupt the elbow bunching conversation...

I have a problem that is scarring me and my LE therapist is out sick  Somewhere on one of the topics I mentioned that I didn't fight where they were going to put the IV during surgery... What I didn't say is that the nurse managed to burst 2 veins and finally another nurse got a vein in the back of my hand... and then last minute used the forearm for BP... I am looking at my wrist and there is a pocket of swell on the outside of the wrist (palm down)... I wore my sleeve for work and gauntlet and noticed it when I took them off after work... Should I be wearing that sleeve and gauntlet all day?? 

purple32

Rocky

I ordered Lymphediva sleeves , but my fitter told me she would have to order JUZO beige gloves (and my hand does swell)  No gloves other than beige. Gauntlet not good enough I guess.  Can you pls link me/ direct me  to where you got yours ?

Thanks for the pic, Linda!

proudtospin

Josh, thanks for clarifying that on compression, I am in the learning mode so lots of questions

GMa, sorry and hope Binney or someone can help you

purple32

ROCKY
I am only finding the gauntlets in color/not gloves

http://www.hightidehealth.com/juzo-compression-shop-arm-sleeves--gloves---gauntlets.html

Sounds like GMA has a potentially serious issue , and I do not know how to bump.  Can someone pls skip back a page and check it out ?
THX

NaniAlice

The best thing I ever fond was my Jovi sleeve. You wear it at night. Omg it is amazing! I have not had to use my regular compression sleeve in months. This after fighting with my arm for 2 years.

Binney4

Gma, don't panic--you'll soon have this sorted out. It sounds like your arm/hand took a bit of a beating (especially that bp), but I'm not sure if you're saying you think that caused the swelling, or your garments did? Is there a gap between the end of your sleeve and your gauntlet? Were you doing anything at work that involved repetitive wrist movements? Is there any new pain, redness, itching?

This evening give it a rest (I know, Gma--to you "rest" is a four-letter word!), keep it elevated (use a pillow to prop it tonight) and stay hydrated. All of that is not just to reduce the swelling, but as a kind of experiment to see what kind of response happens, so keep track--when your therapist gets back it'll help her to know what you tried and how it worked.

Oh, and chocolate, of course. Is it cold enough for cocoa yet?!
Gentle hugs,
Binney

Binney4

NaniAlice, I'm so glad you discovered the huge relief of night garments, and especially that you've had such great results with it. Yes! All good!
Binney

sandcastle

I, LOVE LympheDIVAs....Have ordered from there for my gauntlet........my first was Sunday Picnic.......have many more......Liz

LindaKR

Binney - tell me more about the Gottfried products.  What brands had you tried before?  This next time I need to get one piece glove and sleeve - was it you that said you wore one of those?  There is a place closer than where I got my Juzo and JoviPak sleeves, that sells Gottfried, only problem is that is where I got the Elvarex that never worked quite right, so a little worried about the experience of the fitter. 

I love my LympheDivas, but really need the custom one piece so have a couple for that special night out.  I get so many compliments on them.

Gma - what are you doing back at work!!!!! I hope you you can take the evening to relax, elevate and hydrate!

GmaFoley

I'm doing my computer work not the fabric store. My boss (who happens to be my son) lets me work at my own pace. As long as I get things done.

Binney, my gauntlet goes over my sleeve. I think this is from the BP and IV. I will be elevating for sure.

LindaKR

Gma- sorry, not trying to be the mom here, I'm glad it was at home computer work.  That's great! When I had my bilateral carpal tunnel surgery they put the IV in foot, it was the easiest IV I've ever had!!!! And I've had a lot.  They could have used my port, but no one had ever done that before where I had the surgery and they didn't want to muck up the port.

GmaFoley

Another GRRRRR - its cold this morning and it is the first time trying to put on my favorite Eyeore polar fleece shirt - sleeves make it aweful hard to put it on.... any fun suggestions to make it not stick to the sleeves   I finally got it on but not sure when the "inner child playing with matches" (hot flashes) come, I will be able to strip it back off!!!

Rockym

purple, I checked the Juzo toolbox and other bookmarks that I had when i first went on the hunt for the sleeve and you are right.  I could not find a colored glove, only gauntlets that matched.  If you wore the skin colored glove with the hip looking sleeve, I'm sure it wouldn't look bad.  Does Lymphadivas or other companies perhaps do a colored glove?

Now, if I could only figure out why I have two swollen figures on my bad side.  My breast swelling has never gone down, my cording (3rd time) has gone away, but my middle finger and ring finger have bothered me for weeks.  I didn't jam them or anything.  I'm am way too young to have these weird pains.  Not sure when to see a doctor or if I should.

GmaFoley

Rockym - when the barametric pressure changes the fingers seem to swell on me... have you EVER jammed those fingers??? If you have, that is probably what is happening.. my OLD injuries come out of the woodwork when the seasons/weather changes... 

cinchgirl

ok, my turn to vent..........Lymphedema Sucks!  As if we didn't already have enough stuff to deal with.  My lymphedema is painful as well as restrictive. I remember when I used to be able to ride my horse everyday and actually go on trailrides with my DH.  Those days are long gone. It's all I can do to go to work all day and go home and try to do laundry or cleaning.  Let alone try to enjoy doing something a little fun, UGH!  It makes me sad that we not only have to deal with the pain but all of the inconveniences as well as the loss of some of our life's joy.......

Oh, and did I mention that this past week I had to start back to therapy because now I have cording? The fun continues......

And don't even get me started on the sleeve comments and looks from people that act like you have something they might catch if they get too close.........

I HATE LYMPHEDEMA !!!

Cindyl

Gma - when I want to wear fleece or sweats, I slip a long sleeved underarmour "heatgear" t on over the LE sleeve and put the fleecy on over all of it. The heat gear lets the fleece slip right on and off and helps wick away sweat when I get the hot flashes.  (I have several bigger heatgear t's that I bought when I first started this whole process that are too big to be compressive at this point, but they go over the le sleeve nicely.  I have one that has a tear that I'm going to try cutting the sleeves out of to see if a sleeve alone would work as well.

Cinchgirl- yes it all sucks. I had a 3 day weekend and meant to get so much done and well, I walked but other than that I got nothing done.  The house is a mess, the bills aren't paid, the dogs need brushed (just can't face that, my arm hates me when I spend any ammt. of time grooming. And yeah most of the things I used to do for fun?  Not so fun anymore.

GmaFoley

CinchGirl - you vent all  you want - it does suck, but I am new at this - just diagnosed in June - but I am getting used to what I need to do and when... I find with the beige sleeves, ppl don't notice them because they are so close to my skin color... I was ready for comments, but haven't gotten any..

cinchgirl

I totally understand about not getting stuff done Cindyl..........I was talking with my therapist last week and she told me that I looked tired.  Well, it comes with the territory.  My reply to her was that it is all I can do to keep up with the "basics" of life in this condition. Which is to work and just function at a very minimal level everyday.  Just trying to keep up with a 40 hour work week, bills, household duties and husband takes everything I have in me. Oh, and lets not forget all the time and effort that goes into self treating lymphedema on a daily basis..........

Ok, I feel better now.

purple32

Does Lymphadivas or other companies perhaps do a colored glove?

Not yet.

ROCKY
Do your rings still fit ?

IF NOT , call the LE therapist.

Good luck!

Rockym

It's only 2 fingers which makes it very strange.  My arm is fine and it never has swelled.  I'd cross my fingers that it won't, but they're sore :-).  I stopped wearing my original wedding ring because when I went to the PT, he used one of those machines on me and the ring hurt when the machine squeezed.  I never put it back on, although I now wear my mother's wedding band since it is prettier and larger.

ohio4me

I was at the grocery store checkout. I asked the young gal not to pack my bags too heavy (she was double bagging cuz they were heavy). She looked at my arm/sleeve and very kindly asked what happened. I replied that I get swelling in my arm. She asked what caused it - I said it was from breast cancer. She teared up!

I don't know what her story was but she commented that not a day goes by that she isn't thankful for her health.

Just made me thankful for the things I can do. I get caught up in how cancer and LE have changed my life and that incident was a reminder of the things I have to be thankful for. I walked out of there feeling like I really have overcome some pretty big obstacles.

Just patting myself on the back

purple32

Rockym

Can you try you original ring on ?

If it fits fine, dont worry.

If it doesn't , think about it .

purple32

I had this on another thread, but I think it is pretty much dead, and I 'owe' ppl a follow up.  I hate LE seems as a good a place as any to (re) post this :

Here's my follow up:
Let me just start by saying that I LOVE my new LE therapist ...she is great! She spent an hr and a half with me.  Most of it ws convincing me I would be okay wearing the glove and sleeve ( Its primarily the glove that has me freaked out )
I mentioned something about her ' hand holding' and she replied : " and I will keep at it as long as you need it."
(hello ??!)There's a switch!  When  I showed my surgeon my LE she merely said : " I guess you will have  to have your rings re-sized !"
My fitter came to the appt. ( I think they both know I am totally freaked right now) and she hugged me when she left. I almost cried. I have never had a  " cancer hug" , a cancer  card, cancer flowers, a cancer how are you  etc .. which is 100% my own fault, so I am not complaining.   I have kept this strictly confidential...and now " the world" as I know it , will know.

Enough of that crap.

Now, the Lymphediva blk. swirl sleeve is stunning ( I also have the lotus dragon tattoo) .  Too bad I cover the sleeve and what we see is the JUZO Expert glove( ugly beige )that I hate. It cost over $300. My ins will pay 80%.  C'mon with the  black gloves for gosh sake - its bad enough that gloves show !

I asked the girl :" The last therapist said I could just wear this for exercise but that's wrong. isnt it ?"
She said : " You'll wear it for 3 mos . sunup until sundown.  " Of course I knew, but my heart still sank.  Not only that , my husband is thinking we will be all set/done in 3 mos. I am thinking this girl is " breaking me in ", which is what I need actually.

She took baseline measurements.

She agreed with me that my underlying circulation issues most likely contributed to this .

She explained a lot.  My husband was there the whole time.

The fitter was thrilled with the fit  and she loved the vented gloves- she said they were 'her first'.

I feel like I am in good hands.

She said to follow up in 10 days and she would  show me the MLD in more detail at that time...more of a demo.  She did  show briefly, but  it was closing time by then! ( She spent an hr and a half with me ) She game me the handout and asked me to do it once a day.

Do most ppl do MLD in the AM or PM , btw ?
So, I am on the LE train.  I have been here awhile and knew it, but it is very official now.

I wore for only about an hr and took it all off.

The hand was  nearly back to normal.  I know.  I know it will rebound.

I should take this opportunity to thank all of you wonderful ppl who have helped me thus far. I have no clue how I am going to fight this and the social stigmas that I carry with me. I am such a ridiculously private person. 
But , all that's behind me now !
THX

Cindyl

I guess starting to wear glasses and hearing aids in kindergarten cured me of that kind of self consciousness. I sympathise with your discomfort, but you'll get through it. Welcome to LE Kindergarten!  You'll be fine.  Most people are so worried about their own concerns that they wouldn't notice your glove &  if they were on fire.  Of the ones that notice, some will be thinking of Aunt Mary, who had that same problem or they'll be health care workers or whathaveyou; and others will simply  be curious, because they just can't help it.  Don't let them get you down...

Of course, I sometimes think, after BC I could just wander around naked, because after all, I've shown my breasts to half the hospital staff already so what the hey, next time I have rolling hot flashes I may just do a Gypsy Rose Lee.

And hey, at least the days are short this time of year. Sun up to sun down isn't as bad as it could be!

Rockym

purple, thanks... I went to try on my wedding ring and it does fit, but I like the fit of my mom's better.  I also like the size of the diamond :-).  My husband and I have been married over 25 years.  When we got engaged, I was very frugal and didn't want him to spend too much on rings so I ended up with a .5 solitaire with surrounding diamonds and a wedding band with another bunch of surrounding diamonds.  The ring is darling, but all these years later, I am enjoying wearing my mother's engagement ring with wedding band that has a 1 carat solitaire and my grandmother's that also has a 1 carat.

My last cording experience was rough.  It was a strange web and went all the way down my arm to the top of my hand.  It took awhile to go away and I thought for sure the LE was coming, but I was spared.  Only my breast has LE issues.  The top of my hand hurt for a couple of weeks and that passed.  Now it's just 2 fingers so perhaps whatever it is, it is working it's way out.  I sure hope so.  I want my "somewhat" healthy body back.

purple32

"...and it does fit,"

Rocky

As you know, I am new to all this, but I would think that is a good sign.  Keep a very good eye on the hand, and  enjoy that big stone

Good Luck.

purple32

Thanks, Cindy

I guess the pc. that many of you will find hard to understand is that nobody knew of my BC to begin with  - and I intend to keep it that way! Its way too awkward now to ' tell' , and besides, I really dont want to ( Many reasons, but probably far too difficult to articulate in a text) so that is my challenge.

The sleeve is tight around the wrist ( my most incr+ area) so I think I need to call the fitter today, before I trust the sunup to sundown gig, because right now I couldnt put that thing on and off by myself if I was on fire !

BeckySharp

Purple-  Hang in there.  It does get easier.  I just say if I don't wear the sleeve and glove that my arm and hand will swell.  I don't get into the BC unless it is someone I know well.  Most people don't ask any further or go into whatever ails they have.  I did feel self conscious with them on at first but now I even forget I have them on.  Everyone just sees it as a part of me.  Actually I get fewer comments when I have on the Juzo beige than when I have the Juzo orange, white, or my lymphediva.  I am so glad that you found a good therapist. 

sandcastle

Purple.....I have tried from the beginning to keep my BC private.........in saying that I will NOT let people disrespect me.....when I wear my gauntlet I am so SURPRISED at how many times I am questioned....it can bring one down.......after they ask....they are very sorry they asked the question.....I am amazed at how many busy Bodies are in this world.....Liz

Kay_G

My LE came on just before rads, and I was wrapped for over eight weeks. Luckily the weather was chilly, but I couldn't fit a normal shirt, coat or jacket over the arm, so I had to wear large over sized t-shirts and XL hoodies. Got lots of comments and questions, even at the cancer center while I was doing rads. I was so grateful when I finally got a sleeve and glove, that I loved them. Sadly, that love affair is pretty much over