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

Estel

When I wrap my fingers and hand when I take off the wraps, they look pretty good but within five minutes, the swelling is worse than ever. Does that mean I'm wrapping too tightly, that wrapping doesn't work for me or maybe I'm doing it wrong? At this point I was better off not wrapping .... Not sure what to do.

Estel

JO-5 - I'm curious as to what Binney and Kira say...they have far more experience than I but I wonder if it may be true...one thing we all know for sure is that LE is unpredictable and what works for one doesn't work for another...it is so individual. I don't think the people who have taught me are certified in LE treatment...so I'd like for someone else to wrap me before I make a definitive decision but what I am doing right now isn't helping.

Binney4

Jo and Dawne-Hope, I hope Kira will be along soon and comment on this, but in the meantime I'll throw in my two cents. There ARE contraindications to wrapping, of course (active infection, Congestive Heart Failure). But what you're asking is if there are some people for whom wrapping doesn't work, right? It may be that the two of you are an example of that, or it may be you've never found what works for you. Dawne-hope, it could definitely be a problem of wrapping too tight. When I wrap my fingers I put NO pressure on any part of it. If I do, I end up with sausage fingers and a fat, round palm. Swelling as soon as you remove a wrap is usually an indication of rebound swelling from pressure sensitivity. Try it looser and see what happens. A really experienced therapist might be a help, but the truth is that even experienced professionals are always experimenting with a new patient--we're all different, and we're not predictable, so part of a therapist's job is to problem-solve moving forward. To make it even more complicated, what works now may not work two months from now, so (as Kira's therapist puts it) we have to keep the stupid LE guessing.

I wouldn't be the least surprised if there were people who couldn't tolerate any compression at all, but I wouldn't settle for that explanation without a lot of trial and effort either (as Jo has obviously done!) Wrapping, when it works, is almost magic in terms of reduction and control, and it's too important a tool to drop without a fight.

JMHO. Big hugs!
Binney

Binney4

Gma, hope you're feeling stronger and more pain-free by the hour! Keep us posted!
Really gentle hugs,
Binney

KittyDog

gm...glad it appears to be nothing.  

  My LE PT remeasured me today. I am happy to say I have been exhausted for a reason. I can't explain measurement well but it is by volume. Left leg is down 732.01 a percentage of 169% and right leg is 642.77 a percentage of 71% I am hoping it will come down even more next week. Done with therapy for this week.

Estel

Binney - That makes a lot of sense.  Not really what I wanted to hear but it makes sense.  I need to experiment and try different things.  Who knew we needed to be creative genuises in dealing with this?    I'll try looser and see what happens.  Thank you!

Binney4

Jo, OF COURSE we're going to pay attention to you--the experience you're sharing with us is invaluable.

And besides, our hearts go out to you--the need to be our own doctors, therapists, and diagnosticians is obscene. I'm so grateful that the pump works for you and is keeping things in control, and I wish to heck you could take a real vacation from the constant, constant LE care!

It just ain't right!!

Gentle hugs, prayers for answers that make sense, and a whole plate of cyber-brownies,
Binney

Estel

JO-5 - Girl, we get it!

hugz4u

Jo, We all have those feelings like you do at times but the best thing I have found is this site to vent. Everyone hear understands and we support eachother. Also LE is such a learning curve that all our experiences are helpful whether they are progressive or not. We learn what to do and what not to do from each other.

Incidentally,I am viewed as a mild spirit but LE sometimes brings out the nasty part of me that even surprises me. Especially when I can't get those dang wraps on right. For a little bit of humor to this blasted LE, your post reminds me of Goldielocks. A little bit snug, not to loose! I want it just right!

cookiegal

@grannydukes The sizing doesn't matter...I just cut out a breast sized piece and put it in my bra

nibbana

(dripping sarcasm on)

Boy, it would really be nice to get some sleeves and be able to get my lymphedema under control.



Take your time Juzo, there's plennnnnnty of time for me to get to StageII. !!!

(dripping sarcasm off.)

Estel

I don't have a TV so I haven't watched much of the Olympics but I do have a twitter account and I read online a lot ... and this is my latest grrrrrrr:  All the headlines saying that the kinesio taping is a bunch of bunk.  I've see 4 headlines in the last two days saying there isn't enough research to know if it is helpful -  it's all in the trainers and the atheletes heads ... it doesn't do anything.  *Sigh* We have testimonies on here of some that kinesio taping has really helped ... why are we such hard heads in the U.S. at accepting anything new?  It makes me angry.  And what they're doing to these atheletes and their coaches and trainers is just too close to home to what us lymphers have to deal with in getting treatment.  

GRRRRRRRRRRRRRRRRRRRR! 

GmaFoley

The company I work for just sent me a "Get Well" basket  - that made me smile.

 Big question:  No fever, the pain meds seem to be working, I did take of the surgical bandage last night.. the scar is a little pink and warm... am I in trouble? 

3jaysmom

hi gals, just a quick fly by, but my DH got acall from someone on bco who was afraid id died.. nope, im still here, but sick as a dog.

  been in the hospital three times in two weeks, allergic anaphalctic shock.. by anti bs both times..

  so, i can't keep a thought together, with the prednisone, and albuterol.. we had some fun over no bps etc.. as you know..

  just wanted to say hi, and tell ya i read, but don't type some nights.. hope you all Hold it together.. summers almost over yeah!!

  3jays

Binney4

3JAYS, good grief! Rest up, get strong!
Big hugs,
Binney

Binney4

Gma, I think a little pink and even a little warm might be expected. If either of those increase, go for help. If there's a distinct pink area you can draw a (gentle!) line around it so you can tell if it's spreading. Stay real well hydrated.

Hugs!
Binney

GmaFoley

Binney - being the weekend is coming up - should I ask for antibiotics just in case it gets worse - or just go in?

proudtospin

I am so sorry you are concerned but let us hope it looks better in the AM, if it does not, betcha the docs office will take calls and they maybe able to say, no concern or get the heck in here!

Binney4

Gma, just go in. Not convenient, I know, but always better to have it seen if there's a question, especially this soon after surgery. The whole thing is, just don't decide to wait until Monday if it's worse. And for goodness sake don't just go silent on us--we're a bunch of mother hens here and we'll worry!

Prayers for just getting better, with no further stupid drama!
Binney

GmaFoley

Ok Called surgeon - has someone on standbye this weekend if scar gets worse and path results are B9!!! Amen - now to heal. 

proudtospin

good you called and have a contack on call!  please keep busy and cool

you need a manicure and a pedicure, really you do! it will keep you mind off of this junk

BeckySharp

3jays--I was just thinking about how you have been so silent lately and hoped all was okay with you.  I hope things start looking up for you.  Hugs.....

Now I am also wondering how Suzybelle is doing?

Marple

....and Kane.

sandcastle

That is exactly what I do......when stressed go straight for a pedicure!!!!!!!!!!   Liz

GmaFoley

I'm allergic to nail polish  the last time my ex daughter-in-law gave me a pedicure for my birthday, I went home with swollen toes... edit - let me rephrase that - she gave me a pedicure certificate for store at the mall...

Teka

Binney4

Kane, for sure, Marple. Yoo-hoo, Kaaaaaaane! Missing you!
Binney

proudtospin

If you can not do a pedicure, then my alternative suggestions are massage, facial .....actually my fav is the massage!!

anything that relaxes you and is a reward!

djls

I want to register my complaint about my le....I thought my le was doing reasonably well.  It first appeared in my upper arm.  That went down and then it appeared in my thumb and the left side of my hand.  My thumb still swells, but the hand swelling went away.  Last night, I looked in the mirror and noticed that my elbow seemed to have partially disappeared!  Lower arm looked good...upper arm looked good...hand looked great.  Checked for pitting edema, couldn't find any.  Finally, I checked for pitting edema on the back of my elbow right next to the joint...and there it was!  What is up with that?  My elbow for crying out loud?  I swear this stuff pops up, gets better, and then pops up in some other location.  Is it just my imagination?  I REALLY hate le.

Marple

djls, I'm sorry to say but no, it's not your imagination.  We all present differently and respond to different therapies.  Or don't respond as the case may be.  LE is unpredictable.  That is for sure.  I think these hot humid days aren't doing any of us, who are coping with LE, any good.

Gentle hugs and I hope you get that elbow simmered down and in it's 'happy place'.