GRRRRRRRRR I HATE LE..........
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Debbie, right at the beginning of my LE odyssey, I took a NIA class, for "active adults"--I was the youngest in the room, and after the class--my fingers swelled up!
LE SUCKS!
I just signed up to start Pilates, with a PT who works with my OT--I don't trust any one else and don't want to make a bad situation worse.
Limitations stink.
There is no shallow end of the LE pool--it's impact on all of us, no matter how much we swell is pervasive and insidious.
I give you major points for showing up.
(I don't know if you saw my earlier post about the Livestrong woman at the YMCA who "shared" all my medical history with the class--before I'd even checked it out, and many are my patients. Wouldn't touch that place with a ten foot pole....That was yesterday, and I'm still stunned. I did send her an email about confidentiality and how violated I feel.)
Keep dancing!
Kira
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faithandfifty - I so get it .... GGGRRRRRRRRRRRRRRRRRRRRR!!!!!!!
I feel like I'm handicapped. I live alone and when I buy groceries I have to pick and choose what I bring into the house because to do more, would be too much.
I can't grocery shop on days that I go to the gym. I can't do everything in my yoga class and I may never be able to. It stinks. It sucks. It's not fair. I hear you, sister!
Hang in there! We're in the pool with you and sometimes I feel like I'm drowning, even in the shallow end!
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Kira,
Thanks for making the effort to tell the blabber-mouth what she did. Perhaps she will learn and not do it to anyone else. I'm really sorry she did it to you!
Dawne,
I tried yoga again, and even modified, it gave me my first-ever flare that lasted longer than a few hours. (I'm just stage 0.) We were leaving on a 3 week car trip the next day, and I'm the primary driver. I wore my sleeves and gloves for 3 days (longest I'd ever had to at one time), and developed a pillow system under my left arm to support it, so I could drive comfortably and safely. I "let" my husband who has a bad back carry almost everything the whole trip (and I felt guilty), and he even helped me with MLD, when my left arm was too weak to do the right arm.
Yes, it stinks! Thanks to all of you who are so much worse off than I am for encouraging me and others, and giving us the info to get the help we need!
Dawn (without an e)
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Of course I knew that everyone here would "get it"...... but I have to tell you that it's soooooo nice to be able to vent with people who understand anyhow.
Yes, Kira I saw about your friendly support person who broadcast your story. When we have so little that we can control in our lives, I think those additional blunders strike us to our very core.
Of course I wore my 'gear' to class. To the credit of the multitude no one came over and asked about my putrid baby pink arm.
The thing that I really don't know the answer to is just exactly how to proceed??? And obviously there is no golden answer. My DH is so protective of me, his answer: "Don't go back." I'm so hopeful that it doesn't have to be that black and white.
I've spent the last 24 hours in total weighing this in my brain. What if I only did every other song? What if I only went for the first 30 minutes of the class for the next couple of weeks? What if I didn't 'work out' the day before hand????? If I thought there was any predictability or 'right' answer I would gladly do the right thing.
It's this whole crappy make-it-up-as-you-go-along thing that irks me to no end.
There is also a country line dancing aerobics class which I attended earlier in the week.... it has 90% less arm movement and caused me no issues..... I just don't happen to be as fond of the music. (No offense country line dancers.)
On to a whole different topic.
There is a lovely little thread under 'fitness' called ELAB -- which stands for "Eat Like a Bird" and has been active for nearly a year. To make a long story short, we are currently 'recruiting' new birdies who wanna be held accountable for their own fitness goals: weight loss, veggie intake, exercise increase -- whatever the goal might be.
We have divided into 4 teams and are going to have a contest between now and Mar 8 (the thread's first anniversary.)
If there's anyone from the LE world looking for a second supportive thread -- now's the time!!!!
Today the moderators came on the thread at least 3 times, congratulating us on our little support system & talking about the direction BCO wants to turn with integration of health/proactive/wellness/weigh loss/smoking cessation etc etc. We all flipped out to have the mods asking us if we were willing to be interviewed.
They were also asking us what we wanted from BCO when it comes to the above.
(I thought about saying I wanted revision of the LE info, but thought it might not come off well, taken out of context. LOL.) Mods!!! I want revision of the LE info!!!!!!!!!!!!!!!!!
Please feel free to jump in as an ELAB full member -- or read along there for supportive ideas.
xx00xx00xx00xx
And thanks for your understanding responses.
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Hugs for those having so much crap going on with LE. I think what's really getting my goat lately is people thinking I don't need to do this (wrapping and sleeving) for my arm any more. I'm SO tired of explaining. NOBODY gets it but us. Ha, we've got it and we get it. Blech!
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Faithanfifty,
It is the unpredictability isn't it? I've gone to that yoga class a number of times and modified things in the same way, and somehow, this time it was different. Just tell me the rules and I'll follow them, but there are very few certain rules, are there? I haven't said it before, but today, GRRRRRRR!
Dawn
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Dawn-so sorry about the yoga--it is the unpredictability and loss of control, and the sense that we can't "trust" our bodies that is just so hard.
I'd like a list of the rules also--it would take all this uncertainty away.
And the LE researchers wonder why so many women with LE are afraid to exercise, and want to liberate us with weight lifting--when we've lived through a flare, it sure isn't some place we want to go again.
FaithandFifty--when you can't completely identify the trigger, hard to know how to modify it. I stumped my OT by flaring with 1 lb weights for hand rehab--but she was having me do 40 reps/day, and I never got that far, and "knew" it was a bad idea, but felt I needed to be compliant. Today, she asked why I kept lifting the weights when it was making my tennis elbow flare and my hand swell---my sister talked to me last night and told me to use my judgement and STOP--and I was just trying to be a good patient. How weird that I suspended my own best judgement.
I have to say, the moderators are kind of biased with the "approved" bc.org agenda, aren't they--they've ignored quite a few pm's from me about the LE info on this site, but if you're writing about Dr. Weiss' new goals--to change our diet and exercise (listen to her NPR interview on Fresh Air) they reward you with access to them and interviews. Too bad LE isn't on the bc.org agenda also.
Sharon--why the heck is it anyone else's business? Are they tired of your LE? Because I sure bet you are.
I read this thread, and I see women who are active and working so hard not to have limitations, and dealing the very best they can with limitations that are just so unpredictable as to make us nuts--the old intermittant reinforcement from behavior modification--how do you make a rat nuts? Unpredictable results to their behavior--electric shocks they can't prevent or food that comes at random moments. With dogs, it led to learned helplessness. I don't see the women on this thread learning hopelessness, I see us working hard to support each other find our ways.
Kira
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My LE is improving and my cellulitis is almost gone. Now if I could just get the skin to heal over.
NJ
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In attempting to ferret out my own "rules" I keep coming back to that same set of unpredictable/learned helplessnes frustrations conundrum.
I don't know if I've ever said this 'out-loud' here............
My Surgeon & 3rd PT of last year were in consensus that my insicision has adhered to my chest wall. They both think there is some modicum of 'hope' that it could 'loosen' up slightly over the coming decade or two.
So my breathing is somewhat restricted/different than it used to be.... as a result.
So when I proceed w aerobics I am impacted. It seems that the arms being hyper-active is the straw that then sends the truncal swelling into spazz mode, giving me that wash rag under the armpit feeling. What a cycle.
So I don't know that there is any real good way to create traction.
Grumpy face.
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Kira,
Thanks for the understanding and for the intermittent reinforcement info. Makes perfect sense. If I hadn't come here almost 4 years ago now, I would probably have lots of LE and be told by my doctors that it was nothing. I learned all about LE here, and I learned that my weight lifting at the Y was probably overdoing things, and I was lucky it hadn't caused swelling. Here I learned that I needed sleeves and gloves before a flight I had to take, and here I got the gumption to stand up to the anesthesiologist who was insisting on using my arms for BP and IV. I kept insisting that he couldn't, only because I got my knowledge and courage here. (I finally told him if he could guarantee me that he would have LE for me, if it happened, he could use my arms, otherwise it was my legs and feet! He was a jerk, but he didn't use my arms!). I wish BCO could understand that this board is one of the best parts of their whole site!
Dawn
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Kira - I too thank for the whole reinforcement info ... that is profound and it helps me realize why this stupid LE drives me CRAZY! It is the unpredictability of it all. I'm a perfectionist ... always have been and been rewarded most of my life for doing things 'right.' Now when I do all the 'right' things, it isn't good enough. Thank you for your insight. I'm going to copy it and paste it so I can look at it periodically. Think I'm going to give a copy to my friends too! I HATE that we all had to 'meet' here but I am soooo thankful for you all. Don't know what I would do or where I'd be without all the wisdom, knowledge, encouragement and support from all of you. THANK YOU!
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i looked into zumba awhile ago, faith, but i knew shakin that darn rattle wouldn't work for me. i still rebound, and love it. my newest goal is to get the new Micheal Jacksons thriller for Wii; don't have we, but i think it'll work on my playstation. I got the "flirty" girl dvd.. and its' fun!! not so long ago, i was fit, and healthy, an overweight girl teaching aerobics classes for candy colby, at scandanavian helth club. gone are those days!! i trie d the shaker weights for one day, and returned them the next. i'm just NOT doing any weights on my arms at all!! if i do stretches in the air too long, the weight of my OWN arms flare up.. onward.. ladiess. 3jays0
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I'm glad my post didn't sound completely insane--I just suddenly had a flashback to psych 101.
I agree that this board is invaluable, and while I agree with Dr. Weiss that losing weight/eating right/avoiding chemicals are all important--I sure wish the moderators would have responded even once....
FaithandFifty: can they do any scar work on you--I'll bet they have.Lymph doesn't flow through a scar, so it makes perfect sense that it's hitting a wall and taking the path of least resistance.
I just signed up for a Pilates session--but with a PT that works where my OT works, I don't trust just a Pilates trainer. It will cost more, but I'm not as scared.
Dawn: yesterday at work, I saw one woman who had 7 nodes removed in her SNB and the breast surgeon's office took blood pressure on that arm! Gave her the NLN guidelines. Saw another woman, about 4 years out, who has developed LE in her upper arm and didn't know there was therapy for it. The ignorance is rampant. I was clueless.
I love your response to the anestheia guy: you can have LE for me--that's a keeper!
I woke up and worried that my post was over the top, thanks for saying it made some sense.
Kira
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Kira, BINGO!! For years I've been trying to puzzle out why folks with LE are generally so slow to lift a finger on their own behalf, and you revelation explains it perfectly. I do know that the disfigurement plays a role, and the abandonment by our healthcare providers, but even those things didn't explain the apathy and the difficulty moving LE folks to advocate for themselves -- either individually or as a group. And it explains why here on this forum we've finally begun to find our voice, because in unison our experiences begin to form a pattern that DOES make sense -- we ALL share the same frustrations. Man, that really hit the nail on the head.
As for Marissa Weiss and the stupid bc.org LE "information" pages -- what we do know is that Dr. Weiss is no longer immune to this State-of-Swell we all find ourselves in. Out of compassion for her and our own self-interest in getting decent LE information from this site, I'd like to suggest a PM campaign to the mods in which we all express our concern FOR DR. WEISS'S LE RISK, and briefly express the limitations we personally have to deal with (those of you in the medical professions, please do make it graphic how much of a deal it is in the workplace). Suggest that she personally take precautions, see a well-trained LE therapist for baseline measurements, and FIX THE LE PAGES AT BC.ORG! Hmmmm -- maybe I'll go post a new topic to that effect. Anybody game?
Faith, dear, I sure hear you on the breathing -- ugh! What are you using for breast/chest compression? I find that makes a huge difference to being able to breathe.
3Jays and Faith, if you don't already have it, get the Lebed exercise DVD and study the way the arms are used in the dance segments -- alternating arms, gentle but expressive movements, joyful stretching. Zumba is exercise, sure, but it's also self-expression, and there's room for us to get creative here and still get the exercise we crave (well, maybe not crave -- more like "need"
).Okay, breakfast time here, but if anybody thinks PMs directed to Dr. Weiss about her risk would be helpful, I'll go make a new thread about it after breakfast (mmmmm! Blueberry sourdough coffee cake, from scratch -- I have a talented daughter!
Come join me!)
Binney0 -
Kira - Your post totally hit home and I had a lengthy reply but I deleted it because I felt like I sounded crazy! But know that it really hit home to me and I've copied to a document and I'm going to keep it and look at it periodically and I'm going to print it out and give it to some of my closest friends. Makes total sense and now I know what I've felt crazy and why the sense of hopelessness. Thank you for posting! It meant/means a lot to me!
Binney - Your breakfast sounds wonderful! I'm game on another thread but I don't think I'd be much help, don't know a whole lot about LE. I know Dr. Weiss had cancer, but did she have a MX? I'm guessing she did from your post ... if you smart ones go ahead, I'll tag along and give my "Amen."
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Binney,
I think the PMs of concern for Dr Weiss re LE are a good idea, but remember, most people want to believe they won't have a problem with LE, sometimes even after it hits them. I don't know why she will be any easier to persuade now, unless she is diagnosed with LE. I really hope the mods will listen someday. Thanks for all you do...and have a piece of that coffee cake for me!
Dawn
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Binney (and all) -
Re unpredictable results/ inconsistent reinforcement etc. -- I think this may ALSO be a partial explanation FOR the abandonment/neglect and the lack of unity/agreement/organization/incentive on the part of our BC and LE care providers! Along with (and not unreated to) the fact that LE tx is non-medical, low tech., low profit.
Re Dr, Weiss -- PMs, schmeeMs. You are all far bigger women than I am. I admit to a shriveled, stinky corner of my soul that hopes Dr. Weis does develops LE. I'm not overly bitter. I don't wish her a dismissive surgeon or inadequate insurance coverage (surely she has neither), just a protracted, frustrating search for the "well-trained," creative therapist and the "properly fitting" compression garments (sleeve, glove, AND a vest) she will need for the rest of her life. You know, nothing extreme, just the usual experience of finding her way after a dx of LE secondary to BC tx.
Added to the GRRRRRRRRR thread without apologies.
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SleeveNinja, I too have hoped she'd understand and/or show some concern.
Dr. Weiss has stated that she will not reveal the details of her treatment, so as to not influence other women (I do think she has a right to privacy), but she gives so many interviews that it's pretty clear that due to her family history she had an initial biopsy, then chose to undergo bilat. mx with reconstruction (gave an interview about taking a limo with other women to get nipple tatoos) and now is on tamoxifen. She is a radiation oncologist, and did not receive radiation.
I recently got an email from a prominent LE researcher, asking if I knew how to contact Dr. Weiss, as she wanted to invite her to a symposium. I told her that as far as I know, there is no way to contact her directly, and I suggested she call her practice.
I guess it wouldn't bug me if she was just true to her stated goals: maintain her privacy and not influence other women's decisions, but to give so many interviews that reveal so much about her treatment that any reasonable person could figure it out, it bothers me.
I value bc.org tremendously, but I don't value the inability to give them feedback, and this new reward system if you are following her agenda.
Thanks SleeveNinja for being so brave.
Kira
I work in rad onc and see and treat LE almost every day, but I live with it, so I'm attuned to it. Guess I should hide the details of my treatment so no one will want to emulate me....
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I wouldn't wish LE on anyone however, until someone 'famous' gets it AND is willing to come forward about it we will remain somewhat behind the closet door. LE is expensive, time consuming and a confusingly frustrating issue to deal with. Basically we are on our own. Every time I mention it to any of my Drs. they simply downplay it. I feel beaten down by the medical community as well as LE.
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i, too, feel beaten down; BUT: hey, i've learned how to reinvent wheel, getting le stuff taken care off. we are women.. so, why not roar!!i'm in on any campaign you do, Binney.. i dont wanna live in NO closet; NOWHERE!! i will ck lebed again. i do excersize the arms, and love to dance. just can't "shake them" or do weightss. i wish my comm. was as active as faiths!!! 3jays0
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Hey Kira - "new reward system" - what do you mean?
Not so brave BTW: I'm home for a snow day. Just met the UPS man at my front door (no kidding - a new brand of compression vest arrived). My sox got wet, somehow I lost my balance, slippped and fell. I'm not seriosly hurt but I managed to bang my LE side on the stairs. The wet snow is real but I'm sure I was also punishing myself!
Sharon - that's it in a nutshell.
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I just posted a new topic: "Compassion for Dr. Weiss". Please do PM the mods, all, and feel free to add comments to that topic as well (if we keep it near the top more women will see it, even those on other forums.)
Sharon, I agree with you -- somebody famous and willing to be out with it would make the cause much more approachable. But there's no guarantee that if Dr. Weiss developed LE she'd be willing to be public about it either. Or even that she'd get good LE care. How would she know whether it was good or not? For her sake as well as all of ours, we need to help her see us.
Onward!
Binney0 -
SleeveNinja--as someone who fell and broke her hand--I hope you're okay! It's something I would do.
The "reward system" I wrote about is that there is a thread about exercise and setting goals for yourself--which Dr. Weiss talked about in her NPR inteview--and the moderators are posting on that thread to encourage a applaud women and offer to interview them.
Where, in my personal experience, they never answer my pm's.
If I would just stick to exercising, avoiding bad chemicals, eating healthy foods and posting about it, then maybe they'd write me back.
LE isn't on the agenda of going green.
When I fell, all I could think was that it was my fault--I was rushing, I was clumsy, I shouldn't have taken the writing class--clearly I was to blame for falling up the concrete stairs onto the sidewalk. It's just a fall: and no matter what Freud said--there are accidents.
Kira
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My gawd, so we really are pariahs? (Asked with sarcasm.)
Kira, I think I understand what you mean when you talk about blaming yourself for your fall. Even when I go for therapy if my arm is bigger the question is asked "what did you do this week"? I think we've been preprogrammed to take the blame for whatever. Ha, including getting breast cancer.
I'm believe you when you say your PMs go unanswered but I sit here with an overwhelmingly sad feeling of disbelief.
I hope your arm/hand is returning to it's former health.
Gentle hugs.
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Sharon: thanks for asking--my OT got excitied that my grip strength improved and really upped the strengthening exercises, and my hand swelled, and my tennis elbow flared--and this is what gets me--I continued to do the exercises!! Even though I was upset--I did back off on the amount of reps with the hand weights.
My sister read me the riot act about using my judgement, and I slunk into the OT's office, afraid she'd be upset with me, and she was horrified that she'd caused me to flare and told me she agreed with my sister.
She's a good OT--Norton trained--but young, and I may be her first hand therapy patient with LE, and she learned that I have to go slow.
So, a bit of a set back, but I feel like it's on the right track again.
We used to have a wonderful horse, and used to get a great magazine--Equus--and there was an article that many horse riding injuries happen in a lesson, because you obey the instructor and don't use caution, while on your own, you use caution. It was true for my daughter, who messed up her back while arguing with my husband and the instructor that her horse was too upset that day to race on the track, and he spooked. (We'd just moved him to a new barn, and he was all upset,)
So, trying to be a good patient, and now realizing I need to figure this out along with the OT.
It's been a month out of the cast, and it's a bit of slow haul, but that's to be expected--although annoying and upsetting.
Why do we take the blame--I'm still upset about things that led to my LE, and it's obviously all my fault...
Kira--fellow pariah
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Kira,
I am trying hard to remember that being a good patient means taking what I know about me seriously and not backing down. Many health professionals know a great deal more about medicine than I do, but I know a great deal more about ME than they do, and since many of them don't listen when I try to do my part and tell them, I have to be the one to make the final decisions, even when they don't like it. I finally found a good internist, but she lost the good nurses, and last time I was in, the new young woman was a total jerk about everything, including how to take a good BP reading from my leg. She hadn't done it before, and she wanted to do a blood draw from my foot (her first). I haven't been back to the doctor since, and I'm trying to decide whether to change doctors again, or try to explain all that to the doctor and hope she understands.
Anyhow, blaming myself is something I learned from my older brother when I was two or three. He always blamed me. I figured it out when I was in my mid-twenties, but at 63, I'm still doing it part of the time. I celebrate every time I manage to stand up to someone who wants to do something that I know is bad for me. Why does so much of life end up being hard?
Pariah Dawn
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My question to this board what is the average number of years you have been struggling with LE?
Also what is the best way to treat upper arm LE (only) - my lower arm is not affected yet TG...my dx was truncal LE with radiation induced fibrosis under my arm and in my back. I just put on a sleeve for the first time yesterday. My upper arm was achy still from my New Years Day cleaning spree, so I tried it and it does feel better this morning. Now I need to get more sleeves I guess. I wear compression bras daily and the Jovi at night from my chest but my shoulder and upper arm are exposed with the sleeve and Jovi. Any ideas?
Thank you Kira for driving home wearing compression garments. As I probably would not have thought about using my sleeve because I did not have arm LE. I guess recognizing it is a first step - too bad I'm a year out. It was actually my acupuncturist that said I had arm LE between my elbow and shoulder this past week. He is a Chinese MD and was recommended by my LE PT. At first I felt a lot of relief from the acupuncture but since my flare up began I haven't had very good results.
I'm still hopeful but am beginning to realize this may be a life time struggle vs I'm going to treat it an it will go way. GRRRRRRR!
I am doing modified pilates in my home by myself- more for my back than my chest and plan to go even slower than I have been going. There is a pilates class in my city for breast cancer survivors, I may call the instructor and find out about it. Regardless, I will now wear my sleeve when exercising.
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My grumpy LE moment. You know you have LE when you put on your winter gloves (8 degrees out) on your way to work and the right one doesn't fit.. GGGGRRR... Just venting.
Peace
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Got in town , last night late, after a longggggggg weekend in Indy with Family....... I wanted to check in and tell you this.....
I think FLYING is my LE trigger. I wear my compression..?????? Oh well... I will NOT stop flying.... I suppose I will just have to bring all my wraps with me where ever I fly.....grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
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I would like to ask a question. I have LE, but very mild so far (thank gawd). I have a seroma on my MX scar and swelling under my armpit and some in my upper chest.... not too painful, but irritating.
My question is.... has anyone had breast reconstruction (DIEP) with having LE? How are you doing with the LE?
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