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

lmc1970

Thanks for the info Kira. I will check it out. I'm not sure of the drugs that are available to me because I am in Australia but I certainly will aim to be a bit more pro-active with my care in the future. More cancer has been found in my supraclavicular nodes so that just makes things worse....especially when I had said to the docs I was experiencing a lot of pain. I guess it didn't occur to them that something might actually be wrong.

sushanna1

Kira: Therapeutic nihilism--what a great expression!  I too, went into the breast cancer experience asking how I could avoid getting lymphedema.  (My grandmother had lymphedema and often commented that her "ugly, fat arm" was the worst part of the experience and she, no doubt, had had a Halstead radical mastectomy since it was in the early 1960's.)  However, I was lucky, my surgeon made an appointment to see Dr. Cheville.  She was and is fantastic.  Sure wish that she were still at U of Penn!  

Estepp:  My heart goes out to you.  Right now my lymphedema is under control, but I still resent the time that it takes to keep it that way.  I should be doing more exercises, etc. etc., but sometimes I just want to stop fussing about it.  I swear my friends think I am a hypochondriac. 

Estepp

WOW... I see there is a need...... to vent.

No one gets all this but us.

So many times in a day I  think about how I should feel, being alive and in NED...

Thinking about how, if my cancer progressed to stage 4.... would I think.... how lucky I had it when I was only dealing with the AFTER effects of my cancer and treatments... and how I would give ANYTHING just to go back to... " just" my LE.... and least I was not facing death at that time...

I hope you all heal.... inside and out.

So hard......

kira

Laura, I know that feeling--how can I complain? But, it's not a zero sum game here: you are alive and NED, but you got a chronic disease from treatment that impacts your life. It's real, and you and we have every right to say--as was wonderfully said in an earlier post "This is not a joke, and I'm not laughing."

lmc: having it in your supraclavicular nodes will present a challenge for drainage. Please keep us informed as to how you're doing, and what we can do to help. 

Marple

Kira!!  You posted this on the previous page..........

"You apply the short stretch with enough tension so it lays down smoothly, but no extra pulling, and for more compression, you add additional layers. There was a study presented at the NLN--I'd seen it before--where they compared higher compression bandaging against lower compression--and the lower compression was more effective. And you likely won't wake up at 1 am in pain."

I could just hug you to bits!!!!  I know I'd read before about trying to wrap too tight isn't always best but it takes my pea brain a bit for info to sink in.  DH and I just finished wrapping and I heeded your advice above.......the wrapping went SO much easier.  It was almost like I wasn't fighting it as I usually seem to do.  Plus the bandages laid flatter more easily.  The proof will be in the pudding when I take them off but I am hopeful.  To make a long story short, thank you!!!!!

Oh, I'd hug you to bits with gentle hugs. 

OneBadBoob

Okay, I have been sitting on my hands swearing I would not post on this thread.

Swearing I would remain Ms. Goodie Two-shoes with all kinds of hope and positive feedback, no vents or complaints, as we try to do at  http://www.stepup-speakout.org

LE sucks.  There is no way to get around this.

That being said, I guess the best way for us "swell girls" to go from here is to first grieve--go through all the steps and stages--no way around but to go straight through!  If you try to skip any of the stages, you will just not be able to move forward.  Period,

Like Churchhill said, when you find yourself going though hell, for goodness sake, keep going!!

So, my LE has gotten me to the point where from time to time, I am just so depressed that I feel I cannot go on.  All I can do is put in DVD's of Law and Order SVU reruns and escape.

And then it gets under control for a period and I am delighted--until it swells again.

Hubby and I discussed it, and he thought maybe seeing a therapist would help, since he simply cannot understand why I am not thrilled that I have gone three and a half years without a recurrance. and why I am not delighted and happy instead of needing to have "pity parties" for myself from time to time. (No I did not slug him--damn men only have a certain capacity for understanding, unfortunately.)

So, I had my first appointment with a therapist last week.  She was shocked that I was doing as well as I am, emotionally, after all I have been through!  That was so validating!!

Also, at the NLN conference I found a night sleeve made by Circaide that I liked much more than the Compresleeve, much easier to put on and more comfortable, but must be custom made.  (and twice the price, which I am fighting with my insurance company about.)

So I went for my appointment for measuring.  The fitter was wonderful, and said to me "Wow!  Your arms look great!  Keep up the good work! (Another wonderful feeling of validiation--)

Remember the therapist that told me my arms look great and I probably did not have LE?

p.s.  Does Kira rock or what?  Binney also!!

kira

Sharon:  I just wanted to add Polly's rule of wrapping: if you feel the arm wrapping, and it doesn't feel like there's enough compression, she has me use a second 10 cm on the arm: laid down with no real tension, just enough to have it lay flat.

Fingers crossed that it works well for you!

Jane: Full disclosure--this is the woman who makes stepupspeakout work, and takes NO credit and I got to go the NLN with her and hang out with her, and she's this beautiful, stylish staunch advocate for us.

I say, why wouldn't you have pity parties from time to time, and old Law and Orders are hurting anyone.

Here's my analogy to LE: you wake up from a car crash, and you're alive, but you're paralyzed. Are you self indulgant if you need to grieve and adjust to the disability, and don't feel grateful for the fact that you survived?

We got a permanent disability in the course of an attempt to cure us. I'm glad to be alive to be struggling with this, but I hate the struggle.

Hugs to all.

Kira

Trishia

Can I add to the vent?  My LE was misdiagnosed for years, because it is truncal.  I have had pain on the radiated side since I was 25...4 years after dx.  I was just dx this summer because the swelling was finally noticeable....at 39 years old. For 15 years I have been dealing with shoulder pain and arm heaviness, numbness and weakness.  But the pain and numbness and weakness on my left side has been getting progressively worse.

I'm super active.  I have never let cancer rule my life or my son's life (he is also a survivor).  "I can't" has never been part of my vocabulary.  Even when we received our genetic results (we have Li Fraumeni syndrome), I was like "Genetics Be Damned!".  

But LE?!?!?  It has forced me to say I can't.  It effing sucks.  I still go to the gym.  I still do the things I love to do...and sometimes I pay for it dearly.  But I have to modify.  I have to be careful.  I am in the beginning stages of making a career shift and have to really think about my LE, the pretty sure possiblility that I have un-dx RIBP, and if my body will let me do what I want to do.  

Last weekend I was training to become a LesMills Body Jam instructor (dance carido fitness).  It was 9 hrs in the gym for 3 days.  We did not dance all 9 hours, but a good portion of them.  And sitting on the floor in between.  This particular release has a ton of shoulder height arm movements.  I hurt so bad the 2nd night I didn't even practice my track to present.  I was all puffed up on the chest, underarm, back and breast and my left arm was so numb and heavy.  I cried and cried.  I've worked so hard to become physcially fit.  And dance is a GREAT way and a recommended way for LE patients to stay active.  I was able to finish the training.  Compression tops, MLD, advil and gentle shoulder stretching and a very stubborn and F-YOU LE attitude helped me make it throught the last day.  But it was a big realizaiton that I can't work my body days in a row anymore.  Even sitting at a desk and typing for too many hours/days in a row puts me in so much pain that I get tears in my eyes.  And I have HUGE pain tolerance!  I just had a hysterectomy and didn't take any pain meds other than advil and tylenol!!!  

I'm NOT going to take an anit-depressant for pain.  They turn me into a zombie.  It F*CKING SUCKS!  It sucks that there are no choices.  It sucks that there is no cure.  It sucks that it is progressive for me.  It sucks that I have to say I can't.  It just plain F*CKING SUCKS!!!

binney4

Trishia, my heart is breaking for you, no kidding. I hear you, I hear you, and I'm so sorry. Besides our own personal grief, we carry one another's -- we can't help it. This LE is a lonely thing, so quickly dismissed by everyone not dealing with it directly. So impossible to describe in a way that others can even begin to understand. So endlessly threatening to our sense of ourselves as capable and whole.

Last night (again!) my DH said, "You're sad."

I said (again!), "I feel wrecked."

He said, "You're not wrecked, you're beautiful."

I said, "I'm wrecked."

He's learned he can't "fix" me, so he just hugged me, which happens to be as close to fixing me as it gets. So, Trishia, I wish we lived close and I'd come give you a hug like that one, and none of these nearly useless words would even be necessary.

We are not wrecked, we're beautiful and strong. And frankly, you're an inspiration. Thank you for posting, and prayers that you'll find your way to all the help and support you need, and someday, real healing for all of us.

Be well!
Binney

Marple

I hate LE but I am so grateful for the information and help provided here.  Even a rant is therapeutic and also provides valuable help.  I feel these threads are my safety net.  Thank you to all.

Gentle hugs.

cs7777

Dear ladies, I hate, hate, hate what you're going through.  As someone w/o LE, I feel like an interloper here and am unsure I should post, but just quickly I want to thank you for speaking so honestly because it helps me understand in a way no doctor's description could that I need to do all I can to minimize my LE risk.  I know you're not doing it for this reason, but by telling your stories you're doing a great service for all the women who don't have LE (yet) by helping us be more aware of our LE risk and the reality of living with it if it happens.  Thank you for speaking out.  My very best wishes and biggest, gentlest hugs to all of you.  CS

lmc1970

Thanks Kira-will do. Am very happy to have found this LE "family"! Makes the journey so much easier!

Lisa

Suzybelle

Trishia, girl, I soooo feel you.  I used to run 30 miles a week, lift weights, do yoga - you name it.  With LE I am so limited.  I can walk 2 miles 5-6 times a week, but haven't found a way yet to do anything else without flaring.  And I have to use a poplar walking pole or else my hand swells.

 Yes, it sucks and I love Binney's word of wrecked.  That's better than my self-description of 'freak show'.  That's generally the one I use.  I know it's not healthy to refer to myself that way, but it's how I feel.

And like you, I'm not doing anti-depressants.  I refuse.  Like Jane, I'm going to the therapist and was mortified that I used the f word with her twice.  She didn't kick me out, thank goodness.  My mom would die. 

But the moral of the story is this:  LE sucks, I'm a freak show, but I made an awesome pot of chili today and a bitchin' plate of brownies.  And today I've been pretty happy.  I have to get on my STUPID flexitouch machine for an HOUR and wrap my STUPID arm in compression bandages, but I'm hanging in there. 

It really helps to know that you guys are out there in cyberspace with your swelled up arms/trunks etc. bitching and whining, too.  I love you guys. 

Tune in tomorrow for the next installment of whiny Suzybelle.

Estepp

CS.... hi sweety.... I hope you NEVER get this... learn what you can... PHOTOGRAPH all you can on LE.... if you are moved to do so.... even though you do not suffer this hell.... tell OUR story with your... photos..........

Tricia.. I am glad you posted here.. because for me...for whatever reason.... FINALLY.... your post brought out my tears....such sadness.

I had a weekend full of kids.. grandkids... bonfires.... sleepovers... church.. pumpkin patch... fun fun fun........ and my LE is SO  SO bad after...... it hurts. NO ONE TOLD ME HOW BAD LE hurts...

I have trunkel too..

We bought the grands a wooden swing set for our " park" out back... ( 3 acres).... and to push them is TOO much for me. I AM ONLY young 40s ( chemo took away my memory of my birthday?? I think I am DH's age.... but he is in bed so cannot ask him my age)

I feel like... we can go to the doctor to get drugs for strep throat....our flu... etc.... but LE is totally UN TREATABLE...... I mean.. we go to " therapy".. we do MLD.... blah blah blah............... and we get relief for a few days/weeks... that is it. I had to wrap today... and then take it off.. as the pain was too much.. then put on the compression .. to help the pain feel better... it did for a few hours.. YEAH for me.... BLECK...... then took the compression off.. to see... my arm was no better... and the only thing it did to help was make the pain not so bad as the arm swelled... and the back... It it is like back fat........ but fluid.)

I have to stop typing here.... I could go on forever.

PLEASE FATHER, allow a cure for LE. Please.

Estepp

I want to confess something.

I have been avoiding Binney and Kira over the past two years ( they probably can sense this)...

I did NOT want to be in their group. I fought this big time. I still cannot believe I am here... as I am SO SURE many of you feel the same way. I am nobody special in this hell.

I thank you Binney and Kira.. and any other BCO ladies just trying to help us.

humbled and just sad.

Firni

LE ladies,  you are all so right about people not understanding the time and money and limitations that go into having LE.  My left thumb and thumb pad are permanently swollen.  Since Jan of 09.  I've been to 4 doctors, (onc, PCP, physiatrist and a hand specialist) and 2 LE therapists and the swelling never goes down.  I've used wraps, gloves, gauntlets, massage and diuretics (which are bad for LE).  Nothing brings the swelling in my thumb down.  It hurts.  It's hard to bend.  I can barely pick up a cup of coffee. If I go out in the heat, of course the swelling goes up my arm.  then the sleeve.  Then the hot flashes.  AHHHHH   After two years of trying to get my hands the same size, I have given up.  My insurance company does not pay for compression garments, so I do not wear them often any more. There is no point on a daily basis.  I do take extra precaution when I fly or go to the mountains.   My left foot swells from my toes to my mid foot.  I wear a toe cap and an open toed compression sock all the time.  It's hot and it looks so great with my sandals and capris. Even better with a skirt and decent flats. (Can't really wear heels anymore) Like so many of you I get asked a million times over.  What happened to your ankle. Now instead of making something up, I just say Cancer.  That pretty much stops the inquiry.  The hardest part is finding shoes that will work with two different sized feet.  

I get up at 4:30 every morning so I have time to do my Lebed stretches.  It takes about 45 minutes.  Every night I do MLD and Lebed stretches again.  It keeps the pain to minimum at night.  But way to often I get home from work, make supper, do my LE things and have to go lay in bed coz I'm just so damned uncomfortable.  I can't do a 5K walk to help support anything.  I can't walk my dogs.  I can't go to the beach or even think about putting my swollen hand and foot in the sun.  In the heat.  For god's sake, I haven't even had a hot shower since my first chemo in 12/08  Tepid water only please.  No hot tubs for me.  No spa day with a hot soak, hot wrap, hot stones or even a deep tissue massage. Maybe a hot guy to give the massage.  I need to stop or I will need an anti depressant.  There is just something maniacal about a disease that flares with heat and then you have to dress in elastic.  Which we all know is soooo comfortably cool.  I am soooo looking forward to winter!!!!

Blech.  Is there still room under the bed with brownies? 

Estepp

((((((((((( FIRNI))))))))))))) thanks for comin' here and sharing... IT FEELS GOOD SO SCREAM IT OUT....... on " WE" get it.

If you do not have it... you do not get it. I even have trouble telling others People who want to know... well..... " so you swell ... what hurts about it?    Why can you not get it down... can't you take meds for it..... why does it make your arm look so fat and nasty......why do you care if one arm looks so fat.. at least you are alive... why can you not workout like you used to... why cant you lift 3 pd weights.... WHY CAN'T YOU WORK? "

I have no idea what I am going to do about working.... my PT told me my job will HELP my LE. But is DOES not... it makes it worse... and it hurts to work some days. If I cannot work..... then what.....?????????? Who is there to help us??? DISABILITY??? NO WAY.

Marple

I was told by someone "well I know a lady with lymphedema (although I doubt he used that word.  I think he referred to LE as THAT) and she's just fine".  "She works out and everything". 

GRRRRRRRRRRR I HATE LE.............and insensitive people!

Firni

You know, there are just way too many people out there that "know" someone with something and think they're fine.  My friends and co-workers think I'm fine too.  I'm not.  but I can't spend my life whining about it except in my cyber life.  Here.  Where people Get It.  

My onc told me that the surgery weakens our lymphatic system.  We all know how and why.   It can just take one event to put the lymphatic system on overload.  And for me, the chemo is what put my system on overload and caused the problems I'm having now.  And once its there, its there. Where is the magic pill for this?  And can it be put into brownie form?   

Marple

Hehehe, SOME things can be put in brownie form.  Firni, you might just be on to something!

lionessdoe

02behealthy wrote:

"I used to be this person who could do anything.   Paint the whole house inside and out in one weekend, Sure! Rip up the carpet and lay tile, Of Course!  Landscape and install a sprinkle system, You Bet!!! Now I cannot even sweep and mop my floor in one day without paying for it for days with increase pain and discomfort!!! If I try to fold more then one load of laundry in one day, I hurt.   If I play Wii with the kids, I pay for it.   I have gone from SUPER WOMAN to a mini mouse scared to do anything.  Even going to my daughters soccer games cause me discomfort because of the AZ heat, no matter how much I stay in the shade. "

This pretty much sums it up for me. Activities of daily living. My joy! I'm still looking for my new joy! I'm tired of paying for the simplest of activities of daily living, and so tired of others expecting me to get over it. I'm tired of pain pills, and swelling and now I have to climb the ladder of acceptance and adaptation to radiation induced brachial plexopathy. It just sucks. Every day is a battle of cautious choices that often make me look like I'm obsessed or I've got OCD because I'm running from a bug, or all the other things we need to stay clear of to avoid infection. I've been turned into a frightened little girl. But yet when you think about it, no one knows we face each day with the courage of a lion except each other.

kira

Laura, Why wouldn't you want to avoid me and Binney: we're the members of the club no one wants to join (Groucho Marx: I'd never want to be a member of any club that would let me join.)

There's a lot of pain on this thread, and we face so much--we have a chronic disease that very few people understand and although it's not officially an "orphan disease"--it sure is an abandoned disease---would we send diabetics to the nutritionist and never have a physician supervise their care?? That's what happens in LE.

At the risk of sounding like Pollyanna--it does suck, big time, but there are sucess stories out there as well. Relative sucess, and they will have to be on alert forever, women who no longer frequent these boards.

I always say: We deserve better. We deserve knowledge from our providers, well trained and accessible and affordable LE therapists, insurance that fully covers garments--we deserve MORE.

It's facing a wall of ignorance, with a somehow shameful disease, being in the group no one wants to join that adds so much pain.

Firni, it always amazes me how we tip over into LE, and it never, ever goes away. But I did hear lectures at the NLN that the goal is "remission". If only...

Laura, you may have been avoiding us, but thank you for coming here and unlocking all of this. We need it.

Kira

sisterinspirit

"Climb the ladder of acceptance and adaptation".  Well said, Doe.  Feel I do a pretty good job of that most of the time because what other choice do we really have?  It's when the land underneath the ladder keeps shifting that makes it so tough.

Deb

Estel

I hate it that I've done everything 'right' and still got it.  I hate it that I 'only' had my sentinel nodes removed and I still got it.  I hate it that I'll never be able to do body pump again.  I hate it that I feel so all alone and isolated.  I hate it that no one seems to get it.  I hate that everyone assumes that I should be all better and should be able to get on with my life.  I hate it when people stare at my gloves.  I hate it that the women at the gym can do everything and anything they want and they just take it for granted.  I hate it that I hurt.  I hate it that my doctor didn't warn me that I could get it.  I hate it that my insurance no longer pays to see the OT LE specialist. 

Thank you all for being here, for getting it, that I'm really/we're really not alone in the LE hell.  Some days I'm angry, so angry I could just scream at the top of my lungs for what seems like hours.  Today I just want to cry.  The tears just keep coming.  It just makes me so sad.  I so want my life back.  I want my lean, cut, strong body back.  I don't want to get soft and mushy.  It just makes me so terribly sad. 

Suzybelle

Doe, you are rocking that blonde hair.  You're a hottie!

My fave for the month - was at a potluck tonight.  A nurse I haven't seen in a while comes up to me and asks me what stage I'm at in treatment.  I tell her I'm done with everything - just dealing with the lymphedema.  She says, "Well, that's not so bad, is it?"

I say, "Actually, it's a real bitch."

She was speechless and I pretty much thought that wasn't so bad. 

Firni

Nicely put Suzybelle.  

Trishia

((((HUGS)))) to all of you.  It's okay to have a good brush fit, scream, cry, rage, vent and pity party no w and again.  It's better to get it out instead of let it fester. 

Estepp~what do you do for work now?  Sitting at a desk all day is KILLING me!  I really want to go into health care, specifically as a Physician's Assistant.  To do so required 2 years of direct patient care experience in addition to all the school pre-reqs.  My LE therapist has put an ixnay on several entry level jobs because of my LE.  No CNA or EMT...too much lifting.  No phlebotomist....too much repetitive movent.  UGH.  Anyway...I just want to tell you that by then end of a work day, and I only work 6 hrs a day, I hurt so bad.  So I feel your pain.  xoxoxoxo

Dawne-Hope~I still do Body Pump!!!  I wear a compression top and do much lighter weights than I used to and I do push ups against the wall.  I don't work my arms to the point of fatigue anymore.  That will bring on a hell of a flare for me.  And I do my MLD before and after.  My LE therapist is very encouraging of mild to moderate weight lifting.  

And most people don't know what LE is.  And the ones who do wonder why my hand isn't all swollen up.  When I tell them where mine is at, they look at me like I am crazy. Even my sister doesn't seem to get it some days. 

Suzybelle~perfect response.  

Estel

trishia - you still do bodypump?  do you have reconstructed breasts?  what do you do during the chest press section?  wow.  i would love to be able to do some again even if I have to leave some sections out.  you have no idea how this encourages me ... well, maybe you do! 

Lilah

(((((HUGS))))) to all of you!

wherria

Hello Ladies.  I'm new to this thread, but my LE has been getting worse, and I think I could benefit from your experiences and wisdom (and venting!).  I have a sleeve (no gauntlet, no glove, no nighttime garment), but my LE therapist ordered new sleeve and nighttime garment for me last week.  I'm going to get them today or tomorrow.  My question at the moment is: are any of you seeing a physician who specializes in LE, not just a therapist?

Thanks.