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

hugz4u

Can I just say I would wear the oldest, dirtest, stinky, widest wrap and serve tea to the queen wearing it,if it meant I could do somthing for this stinkin LE!

kira66715

Cookie: free fall of panic sums it up so well.

I remember seeing my hand swell, and was oddly numb, but it was only three weeks post op. But later, when I came back from a day's meditation seminar, and had pitting edema on the inside of my wrist, I called my LE therapist in a complete panic. And when it's popped up in other places--like when the Foldi Clinic trained LE therapist at Mass General told me not to wrap the pinkie, and I woke up with a sausage pinkie, and when it moved into my fingers/palm, these all brought on panic.

It feels like a body betrayal.

cookiegal

Hugs4u!!!!!  That made my day!

Binney4

Kitty, yee-ha! Fingers all crossed up and hoping they'll come through not only QUICK, but PERFECT!

Gals, if it's any comfort, we all really ARE doing something about this stinkin' LE. We're speaking up, we're educating our doctors, and most important of all, we're supporting one another all over the country and the world as we all learn to stand up for ourselves where this pariah of a rotten condition is concerned. We're not taking any of it lying down anymore. And we're going out and getting on with our lives, thumbing (that should be fat-thumbing!) our noses at the way LE makes us want to crawl into a hole and hide. 

Onward!
Binney

kira66715

I did hear back from the sponsor of the horrible talk, and they're pulling the plug on the woman who said "All LE patients lie, and all LE patients are noncompliant."

It's awfully tiring to be outraged and have to fight, but we are a powerful group, we are.

Quail

Well done, Kira! That was fighting the good fight, indeed.  I'm proud of you, and of US!! Hooray.

Leah_S

Kira, I would have been tempted to ask her why she works with LE patients if she has so much hostility towards them. And ask it publicly, too.

Leah

NatsFan

Kira - good for you!!  I was so angry when I read your original account of the presentation!!!!! 

I had a thought - did the attendees of that lecture have to register?  If so, will the company be sending emails to those who were registered to correct the outrageous misstatements, apologize for their representative, and letting people know that she no longer is a recognized representative of the company?  Why do I think the answer is no . . . 

kira66715

Mary, you are so right: going forward, information will be closely checked for accuracy and formal feedback evaluations will be collected and responded to. Those who heard her bizarre--totally agree Leah that she plain doesn't like LE patients--misrepresentation of the facts will not be contacted.

I spoke to a few of the LE therapists before I left, with steam coming out of my ears, and they all said "Didn't understand a word she said"--but they can't help but be influenced. ("You should NEVER be working harder than the patient. Never."--really? who is getting paid?)

My own, beloved, LE therapist sat with me, and we talked about it later: (at the time I was hissing "all of this is inaccurate!" across the table), and initially she said that the rule of "you come in with all bandages rolled or I fire you" was good, but after a discussing it, she  said that when her leg patients come in with a huge jumble it takes half the time to sort it out. So I said--explain that they get less treatment, and see how you can assist them to aim for the goal of bandages rolled.

Ironically, at the Ohio conference yesterday that at least 5 of the women on this board attended, the lecture on pumps, given by Joe Feldman, head of LANA, discussed how much he doesn't like them. And this CEO was in the audience. Oh the LE drama!

I know I'm Binney's evil twin, but I sure get tired of sending outraged emails....

Teka

We need a federal law that every cancer center or hospital have a doctor to oversee the care of LE patients.   My RO and MO show no interest in long-term LE care.

kira66715

Mine either. My PCP is glad to write scripts, but she admits she doesn't know much about LE.

At the "doctor supervised" clinic at our local breast health center, the medical director is a breast surgeon with no training in LE...

Teka

PCP does take an interest in my overall care.

carol57

I went to one of (supposedly) only four NLN-designated comprehensive LE clinics in the country--to qualify, they have to have a physician assigned to supervise , plus some other requirements, I imagine.  The MD in question is a wound doctor, and a nice fellow, but after noting I had a 10% higher arm volume on my arm giving me pain, he said he's not a believer in subclinical LE and I should return in six months for another measure.  He is in that clinic about 6 to 10 hours a week, otherwise in his normal practice of wound care for diabetics and others.  I sought help from another clinic soon after.  The point is that just having a physician in charge doesn't mean it's a physician who knows about or embraces good standards of LE care.

Jane Armer, at yesterday's LE summit, pointed out that the American LE Framework and (I think) NLN worked out an agreement that to become NAPBC-accredited (national accreditation program for breast centers), a breast center will have  to include LE follow-up ( I think those were her words). Here's a link to the standards manual...do a ctrl+F search for 'lymphedema' and you'll find what's been inserted.  I guess it's a start. http://napbc-breast.org/standards/2012standardsmanual.pdf

Carol 

KittyDog

I will say I am very lucky that my oncologist office does take a part in my LE.  No questions asked if I tell them I need to go back for PT.  Our hospital has started pre-measuring breast cancer patients.  What we really need is more LE PT.  Two is just not enough.  It shouldn't take a month to get in for an evaluation and then another two weeks to get started.  Then to top it off no appointments available on Friday. 

I am so glad my fitter got approved because we are now not going with thigh highs.  It pays to have a good fitter.  She question if I would be able to even pull them up in the back.  I had not thought of that at all.  I have still have a slight frozen shoulder that also has a torn rotators cuff.  We are going to try Solaris's Ready Wrap.  Probably bulky and ugly looking but she is so correct with how hard it would be for me to get them up as high as they have to go.  

Thank Kira for all your letter writing and meetings you go to.  My LE PT has us come in wrapped.  I usually help take off and roll them.  I told her today..because my child has been helping did that mean a discount.  She laughed and said she doesn't get paid to take them off, she gets paid to wrap and massage. The taking off is just a bonuses.  lol  They know us all to well if we didn't come in wrapped we might be all to willing to take them off the minute we have a hot flash.  

The times I had to unwrapped for a good reason I always took them back in ready to go.  I have even been known to start unrolling and re-rolling while waiting on my appointment.

cookiegal

Go Kira...speaking truth to power! Right on!

(I know I am sounding very 70's but I am sleep deprived this week.) 

GmaFoley

Couldn't help myself - we always talk about chocolate here

Teka

carol57

GmaF, that is spectacularly funny! Thank you!

GmaFoley

I'm trying to stay positive with everything I am going through... Just need lots of laughter even though it makes me hurt... Need to drive myself to surgeon's office today... only tylenol on my agenda... will take a pain pill when I get home... This heat isn't gonna help much... 110 here yesterday, supposed to be hotter today - so far cloud cover... and in the 80s it seems to turn on us about 2pm so we shall see - of course my doc appt isn't until 4:30 so much for keeping this positive.... LOL

QUESTION Axillary node is hurting alot, even though it wasn't anywhere near the surgery.. I have only done my computer work - no lifting etc... LE??? what should I be doing? I have been breathing, elevating and drinking water..Anything else???

BeckySharp

Gma--Thanks for the laugh!  I would be the nut if all of them were mine!

mags20487

went back to therapist today for an eval on the "good" arm that has the severe cording.  She said it is not swollen but to be sure to do lots of stretching and make sure I do MLD often.  It is so bad that it runs down the entire lenght of the arm almost to the wrist.  Nasty pain!  Just glad she said it did not look like LE yet!

Maggie

hugz4u

Mags. I never had cording so I can't comment but I want to wish you well and hope the pain leaves as fast as it came. It sounds awful. Hang in there. I know you can do it! Stick with us and the experts will have some experiences to relate.

Binney4

Gma, you're already doing what you need to do. Make an appointment with your LE therapist sometime soon for an assessment and some soothing help. I'm so sorry for all the misery! Rest up as much as you can--"only" your computer work is probably enough to make problems, so hopefully you'll get a couple of days off shortly.

Real gentle hugs,
Binney
P.S.--LOVE the assorted chocolates--laughed out loud and the whole family had to come see what I was cracking up over

GmaFoley

Surgeon appt... GRRRRRRRRRRRRR - he had alot of emergencies today by the time I saw him..and hour late.

1. Took one look at my breast said, "at the 2 week mark, if the tape doesn't fall off - rip it off in the shower

2. Your ok go back to work - (I think he forgot I work at a fabric store)... waiting for a confirmation on that one.

3. You have some edema - "soon as the scar is healed start back doing the MLD"

4. Forgot to ask him about when to go back to my LE therapist. waiting on that one too.

5. "Come back to see me".... forgot to tell me when.. 

6. Asked him about the tamoxifen and ovary issue -" you will do fine on it - take it" end of discussion...not quite the discussion I was hoping for.

I am in shock and very depressed... do I have a reason to be?  Was my awesome surgeon having a rough day??? 

Edit: Binney - maybe it is time for me to look at the chocolate pictures again.... Feeling sick to my stomach tonight - too hot - 113 outside my office door... and our boarder decided to put on the oven for french fries - going to go in my bedroom - a small airconditioner in there!

kareenie

Gma - don't worry about the Tamoxifen and ovaries, it is the endometrium (uterus lining) you have to worry about.  If you have ovaries but no uterus you should be all set.

dunesleeper

(((GmaFoley))) Just want you to know I can relate to your frustration and your worries. I was considering renting my spare bedroom, but I think I will hold off on that. The boarder situation sounds like it could be even more stressful.

GmaFoley

Well no worries about the surgical tape coming off my scar - I was sweating so much last night the tape came off on its own... Guess that is one fight down...

GmaFoley

Have a good weekend - I wish this heat would go away..

  

Teka

Warm rain!!

GmaFoley

104 outside today - I was helping our boarder with something today and was in the car way too long, had to turn on the air while waiting, but doesn't work well . I might be exagerating but my breast is a size of a cantalope!!! Surgeon says no LE therapist for another 2 weeks.... What am I supposed to do now??? Help Please... Water - how do you elevate a boob?(sorry if that work offends any one ). My upper arm is beginning to swell again  I'm sorry I'm such a basket case with this - Oh I am also going through withdrawls from the pain meds - couldn't take them while I'm driving...