Thank you

Suzybelle

This morning it occurred to me that I am no longer in a constant state of anxiety about my LE.  I know what to do, even when things go way off kilter.  And they seem to do that, sometimes, don't they?  I practically have 3rd degree burns under my arm right now because I missed applying barrier there and the kinesio tape attacked me.  I wasn't even that concerned about it...I know what to do.  I had to bandage two days last week besides my routine at night...and I didn't get upset, I just did it, and went right on.  I know what to do now.  And if I don't, I know where to go.   And I owe that to you guys - nobody else. 

Thank you, kira, Binney, LindaLou, Jane, Nordy, KS, cookie, Iago, MOTC, Sharon, Becky, Estepp, and all the other wonderful ladies who help me, encourage me, and are just THERE with me.

There is something so comforting in knowing there are others out there in the world who are managing their LE, and managing to live happily.  And when one of us stumbles, what a comfort to know we have somewhere to go to hear some wisdom, and get some reassurance from women who know exactly what it means to have this stuff.

I hate LE, but it could be a whole lot worse.  I could be dealing with it by myself.

BoobsinaBox

Suzybelle,

Perfectly said!  Thanks for saying it for so many of us!

Dawn 

KS1

I would also like to thank everyone, including BoobsinaBox (and excluding me) and SleeveNinja.  Living with LE is challenging (I just deleted a nastier word) and even highly trained LE specialists don't always get it and don't seem to have the collective practical knowledge of the group.  KS1

Suzybelle

oh, I need to thank Dawn, too!  Dawn, I always think you and Jane are the same person...she is OneBadBoob, you are BoobsinaBox.  Similar, yet different.

 

Ditto KS on SleeveNinja.  Love SleeveNinja!!!!!!

I need to change my moniker here to something warrior-ish.  SuzySoldier, SuzyDeathSquad, SuzyIwillkickyourA##... I'll come up with something.

kira66715

Suzy, you have helped so many of us with your trenchant humor--when I get discouraged, there you are with a true LOL post.

LIving with LE sure does suck sometimes, but knowing I'm not alone and that there's a great group of women who care and help makes it so much better.

We've learned a set of skills we never wanted to learn, but as JoAnn Rovig once said "it gives us our power back."

Kira--who is also very, very thankful

It's like the Oscars--you could never thank everyone without overlooking someone, and I'm biased but I think the women on this forum are simply amazing. 

NatsFan

Agreed - Knowledge is Power!  I second Suzy's thank you to all of the Swell Gals here, and especially Binney and Kira. 

We certainly get little to no guidance from the health care professionals like our surgeons, oncs, PCPs, etc. so we're left to rely on each other for our knowledge.  Thank you, thank you, thank you. 

Leah_S

I also want to thank all of you. I've had an easy time with the LE (as easy as you can, I guess) and I know it's due to the help I've had here.

I don't think I would have known to get help at all if not for what I read here. My LE is in my upper arm so it wasn't as visible - I knew something was wrong because of the "pillow under the arm" feeling. My LE PT was pleased that I came so early. She told me that most of the women she sees have some degree of fibrosis before they come.

And, Suzybelle, we already know you're SuzyIwillkickyourA##WhileMakingYouLaugh.

Leah

Binney4

I'm adding my huge thanks to every one of you -- you give me courage and (do I even dare say it?!) pride in being part of this sisterhood of strong women. I love the determination to deal with this head-on, the sense of humor and the creativity of all your solutions to our everyday, unacknowledged trials.

Onward!
Binney

BeckySharp

My thanks too--to each and EVERY one of you.  Due to this forum I also caught mine early and would have been ignorant and believed my surgeon that it was just swelling from surgery.  I have learned so much and hope to continue to do so from all of you great people.  I am into my seventh week of 24/7 wraps and will be sending out brownies when I am in a sleeve.  Improvement in measurements but now quite at normal (1/2 cm more).  I do feel more each day that I can eventually take control and know what to do. 

Today is a beautiful and sunny day!

Becky

Suzybelle

I think my next phase in educating my local drs. is to stress the importance of tramping around and eating brownies.

 VERY important stuff.

Binney4

BTW, Suzy, just wanted to tell you how sorry I am about the tape "burns" -- so ouchy! Heal up quick, Sister!
Binney

Suzybelle

Oh, Binney, thank you!  But it's my own fault - I should have been paying more attention when I put down the barrier.

I bet I do better next time...

hymil

I think my next phase in educating my local drs. is to stress the importance of tramping around and eating brownies.

I'm up for that too, what a great group! I didn't choose LE and and to push to get it recognised and treated, but am coping better than expected now thanks to Team-Power-Wrap 

BeckySharp

Hey Suzybelle--what barrier did you forget to put down?  I just removed my tape.  No problems.  Such relief.  But after about a week it starts hurting again.  The swelling seems to be all gone.  I have worn tape three times now for 5 days each time.  Each time seems to give me relief longer and longer.  My therapist still uses Pepto Bismol.  If I remember correctly you tape your arms.  Becky

sisterinspirit

Without a doubt, the best part of having LE is all of you wonderful ladies here offering education, compassion, support and friendship.  And of course the comic relief offered by Suzy.  Such a gift of putting into words what we are thinking and feeling.  Knowing that I am not alone in dealing with this stuff is the biggest gift of all.  Many thanks to everyone for sharing their wisdom and knowledge and empowering me to take charge of my LE.

With gratitude,

Deb

Suzybelle

Becky, it's this spray stuff by Smith and Nephew - it's really good, and makes the tape adhere better.  I tape my right arm and my right side (which is where I neglected to put the barrier and now have lovely octopus shaped burns.  Nice.).

I 'think' I remember my therapist saying that the tape loses it's efficacy after 2-3 days.  I generally tape twice a week.  I remove the old tape with grapeseed oil.  It keeps it from ripping my hide off!

Marple

Suzy~you've added so much too.  Thank you back at ya Sistah.  Except for the help on these LE threads I think I would have given up trying to manage it long before now.  Absolutely NOBODY 'gets' it except those who have it.  But then again, isn't that the way with many things?  I'm afraid I'm still resentful of LE, the time, the expense and the changes it has made in my life.  But, some days it's really not so bad.  Your sense of humour always brings a smile.  I salute you with a pan of brownies.

kira66715

Sharon, Binney and I just wrote each other that we're so thankful for the women on these boards, but we still hate and resent LE.

They're not mututally exclusive.

Kira

Suzybelle

LE sucks like a Hoover vaccuum.  I get so sick of having to constantly obsess, assess, and compress (Jackie Childs/Johnny Cochran imitation) my stupid arm.  How I long for the days when my arm was simply an appendage and not a stupid project. 

HOWEVER I am eating chess pie right now, which really helps my feelings. 

kira66715

Suzy, you never cease to amaze me--got it in one!

I want that tee shirt (obsess, assess and compress--PERFECT)....I'll wear it to Komen events where they don't acknowledge LE.

Kira

bingbing

My thanks to everyone here too. I caught it early because I was aware and that was because of all you here on this forum. I will always be grateful and I do say a little prayer for each and everyone of you every nite.   Sharon