Just Venting

Nordy

You know what... I am going to sound like a big boob here, but I am just so sick of lymphedema. It is either the tan colored sleeve, which just cries out "medical condition" or it is the cute lymphediva sleeves that people just assume I wear for fun. I get so many "compliments" on how I wear my "tattoos" - I hate it. Yes, the sleeves are super cute, and certainly break the monotany of the everyday sleeve, but at the same time I am just tired of trying to explain to people that I would really rather just not have to wear anything - that wearing a sleeve that looks like a tattooed arm is not because I "want" to. Sorry... usually I just go with the flow and enjoy the opportunity to educate people... I am just burnt out. Maybe too, because I was at a Duran Duran concert last night and resented waving one big fat "tattooed" arm in the air. I have just started to feel back to my normal self after 5 years of surgeries since diagnosis - and this was just a reminder that I will probably never actually be back to my "original" norm. I know, I know things could be worse... I will go pull up my big girl panties now and stop feeling sorry for myself.

kira66715

Nordy, LE wears you down. I once saw a physician who told me that in his opinion, the ability to tolerate symptoms declined as they persisted. If we knew this would be over, we could stand it.

And, add to the permant issue, the fact that we're pitied, subject to horror from other survivors (all the posts of "thank goodness I never got LE"--yeah, thank goodness, I'm the pariah who did...), the global lack of understanding, and the fact that we're approaching pink October where the "acceptable" script for a breast cancer survivor is one of triumph and moving on and getting some weird gift from getting cancer.

The fact that you were at a Duran,Duran concert--and you run marathons, and are a triathele---you are amazing, but even amazing women have the right to be royally ticked off at LE.

"Have I told you recently how much I hate LE?"--(Binney)

No, breast cancer left you more than a pink ribbon, and it's all tied up in collateral damage, and do we have the right to resent our treatment. IMO, we do have the right to resent that our treatment left us with a chronic disease.

Your huge fan.

Kira

BeckySharp

Hey Nordy--You are one of my mentors.  Hang in there!  You do so much despite your LE.  Now, tell me where one buys "big girl panties"?  Becky

Nordy

Kira and Becky - thank you both so much! I knew this would be a "safe" place to vent with out all    the , "Well you should just be glad that... " bullsh*t that comes from those that don't "get it". Because the bottom line is not that I am ungrateful for what I have... but... Well I have a shirt that says it best: "I want it all." And, yes, I do want it all... and I sure as hell don't want lymphedema.

Becky...  the big girl panties are in the toddler section that is a step up after pull-ups... I frequently have a hard time finding a pair in my size.. 

Binney4

Nordy, I hear ya'! As a matter of fact I'm in the same place at the moment, and it had nothing to do with Duran Duran. (I wish it did!!) I don't know what it had to do with, but it does happen every so often, and I'm never prepared for it. It's this morass I sink into when I'm least expecting it. My (amazing, peerless, wonderful) oncologist continues to write me a prescription for Ativan for just these down times because, he says, "chronic means it never goes away."

So if you can't find the size you need in the toddler section, it might just be because this is, after all, a big-girl problem, and we're entitled to vent as needed. Thank goodness we have this big-girl place to come!

Courage!
Binney

ktym

Nordy, right there with you this week.  DS gets married next weekend.  I'm alternating between being grateful I'm here to see it, and resentful that I have to wear sensible not cute shoes because of the neuropathy, and that taking my sleeve and glove off for pictures seems like such a treat. (Leaving the other so not comfortable compression garments on).  I'd rather be in sensible shoes and a sleeve and glove and garments and be there, that goes without saying, but, I'd really rather be there with my old body back.

sundermom

Nordy,



First of all I'm so inspired to see your dx and to see that you are 6+ years!!! I was recently diagnosed with LE and it has been quite a blow. I was just starting to bounce back from all of the other treatments, and . . . Whamo . . . numb hand and swollen arm. Despite wrapping my arm and wearing the sleeve, I'm still in denial that I'll be dealing with this for life. It is depressing as are all chronic conditions. I'm 38 and feel like 80 (at least what I think an 80 year old feels like). Here's hoping you don't stay down for too long

kira66715

Kate, my LE came on the week after my daughter's wedding-I had extensive axillary web and a seroma, but it was the bug bites when I took my visiting sister to the beach that tipped me over the edge. Well, there are a ton of really nice wedding photos, and I was wearing a sleeveless dress, and I find myself staring at my left arm/hand and thinking "That's how I looked before LE." Really, really weird.

I actually had two dresses, one if I needed to cover up my arm, and one if it was okay--I was under the "care" of an LE PT who gave me all the wrong advice (repetitive motion, no risk reduction info) and she told me to wear the sleeveless one....

Wouldn't it be great not to have to factor LE in? And/or neuropathy?

 Sundermom, this is really difficult stuff--there's a page on stepupspeakout, written by Pat O'Connor on the emotional issues with LE:

http://www.stepup-speakout.org/patoconnorcopng.htm

Chronic does mean it never goes away, but it does get better--and sometimes you just get SO sick of it. That's what this place is for...

Kira

mamamiaow

i attended my ds's wedding in a city 4 hrs away by car during chemo! i had to wear a wig (one of the 2 times i did when i was bald, it itched), had almost no eyebrows and few eyelashes. it was in may, and hot here in tx, i found a dress in one day and wore silver flat sandals on my swollen feet. i was very tired, but dancing with my son at his wedding.....priceless!

ktym

Well mamamiaow, thanks for the reminder it could always be worse.

Suzybelle

Yeah, I hear you.  Kira nailed it for me - I get soooo tired of the looks, the pity, the wierd response from other bc ladies who have not gotten LE...like, if they get too close they'll catch it...it all just gets old.  And it brings out the worst in me.  I just want to tell everyone to go jump in a lake.  I know this is wrong, and I when I really get in that negative place, I know it's time for a serious attitude intervention.  But it's just hard sometimes. 

Some days I do okay with it...other days I don't.  Today is one of those days when I want to tell everyone to kiss my grits.

Sorry.  The good news is this too shall pass. 

kira66715

Suzy, my LE therapist told me she saw an interview with Morgan Freeman and he was wearing a beige compression glove( didn't even match his skin tone)--I guess he's had an accident and due to imobility, developed LE, and he kept trying to hide the glove and then said something about "blood pooling" Wouldn't say the word "lymphedema"

Why are we pariahs? We're like the visible reminders that breast cancer isn't the feel good disease of pink ribbons and personal growth. 

Still don't get the shame aspect, but do feel it.

Suzy, on a day where everyone could kiss your grits, I'd be very, very careful.

Kira 

Binney4

Kira, the sad fact is it's entirely possible that Morgan Freeman himself has never heard the word "lymphedma." Those of us with post-bc LE have a vastly better chance of getting diagnosed and treated for it than do people with trauma-induced lymphedema. In fact, we're more likely to get treatment than even our sisters with leg or genital LE from gynelogical cancers. There's an incredible amount of ignorance out there in the medical community (as we're all aware), and it gets "passed on" to patients like MF. Here are some pictures of his gloves:

http://www.huffingtonpost.com/2009/12/04/morgan-freemans-hand-what_n_380717.html

None of them is recognizable to me as a brand we normally use, so it's likely he didn't get them from a LE therapist. Maybe somebody oughta tell the guy, y'know? GRRRRRRRRRRRR!

Binney

BeckySharp

Maybe he didn't use the word lymphedema as it means nothing when I say it.  I only get blank stares.  If I say swelling in the arm I get more nods.  I only use the term when someone asks me to explain.  Becky

kira66715

Binney, the black glove looked like a farrow to me. Interesting that the Huffington post thinks his hand is shrinking, and it looks the same to me.

Should we tell him he has lymphedema?

Becky--totally agree, absolutely no recognition of what the term lymphedema means. I tend to say "swelling after breast cancer treatment"

My DH's good friend's colleague had a stroke and developed LE due to immobility, and he was wrapped and in compression, and that's when our friend finally "got" what I go through.

Kira

Nordy

Hmmm... Morgan Freeman's one glove looks like this one: http://www.pattersonmedical.com/app.aspx?cmd=get_product&id=97588

 Sorry, tried to do the link thing above, but it only works if you copy and paste... don't know why?!

I know this because I have used this particular one - shoulder length - on occassion. (I don't particularly recommend it to everyone but for me less is more & this sleeve sometimes actually helps me - although I don't wear it often).  

Anyway, yes... lymphedema is exhausting. I would guess that any chronic disease is... but I haven't given up hope yet... waiting for stem cells to fix this someday. Hope it is in my lifetime!!!  (although I did see that there is a doctor in Cuba injecting stem cells into people's arms and having good results... but, uh, not planning on flying on out to Cuba anytime soon... )

And thank  you again everyone for support - and commiserating! What an awesome group!

kira66715

Nordy, there's some great research out of Stanford, soon to be released which may offer a lot of hope.

And it's a whole lot siimpler than stem cells or transplants.

Kira

toomuch

I just wrote, "It's so great to read these posts and to know that someone gets it." Then I realized that doesn't seem right. It's not great to read these posts where we all intermittantly suffer from the exhaustion of dealing with LE! It is great to be able to commiserate with folks who understand. I usually prefer spring and summer to fall and winter but I found myself grateful when it got cool this year because I could hide my sleeves under my long sleeves. The questions from summer, tired me out!

Nordy - I'm with you. Hoping for a cure in our lifetime!

Kira & Binney - Thanks for always providing us with such amazing information!

kira66715

Toomuch, yesterday at lunch, I was talking to the radiation therapists in my office, and one woman has LE in her hand, and talked about how the LE therapy she had was not helpful, and I told them that I wrap every night, and they were uniformly horrified!

This is an amazing, empathetic experienced group that works with oncology patients daily. And LE is on our consent form. And I've noticed the woman with LE had a swollen dorsum of her hand--she said the wrap was horrible and they didn't explain MLD to her.....ARGGHH.

But, there was this dawning recognition of the fact that I pay attention to my LE daily, and they just didn't know.

This forum is a safe and wonderful place for me, because everyone here does get it.

Yeah, I'm no longer enjoying summers.....

Kira

duckyb1

I just got done ranting on another thread about LE...................and yes I am sick of it........sick of the whole frigging thing...............................all I want is some normalcy back in my life......................no LE, no Femara, no water retention, no weight gain, no swollen boob,................no stupid questions like.........................what is that thing on your arm.................oh its for LE......................oh, what is LE........................how long do you wear it.....................will it go away........................and then the best one, when they look in your face........................ARE YOU TIRED.........YOU LOOK TIRED.....................I feel like saying..............yes I'm tired.........................but your stupid..........................and tomorrow I might wake up "not tired"......................but your still gonna wake up  "stupid".............................all I want is normalcy again in my life.........................I'm thrilled to be alive..........I'm thrilled no chemo................thrilled that advances have been made in treatment of cancer......................but I'm sick of LE, sick of medicine, sick of being sung Happy Birthday to You, by a bunch of assholes who have no idea what a cancer patient goes through................................ok, I'm done, and I'm going to go get the Vodka...................HUGS LADIES.................YOUR MY ROCK.....

kira66715

Ducky, watch out, Pink October is just around the corner. The first time I read an Oprah magazine "Cancer took my breast, but it opened my heart" I hurled the magazine across the room.

And the football players with the pink shoes. 

I need nausea pills.

I haven't seen the Ricky Martin add, glad I missed it.

Ducky, we've all been there. 

Vodka, brownies, whatever works.

Kira

duckyb1

Kira.........................haha, ate the Brownies on Saturday at my grandsons, college football game, while tailgating................that is where I met the idiot who questioned me thoroughly about my LE..............

Your right no one knows what a cancer patient goes through................unless you have walked the walk..............the only thing that opened after I got cancer, was my eyes, and my mind to what women with cancer go through.................until then I could only try to understand........................now I know...............it is not pretty.............most (even the ones closest, and the most helpful" to us............have no idea.........................who truely does know.......................

ALL MY DEAR FRIENDS LIKE YOU KIRA, AND ALL THE OTHERS TOO NUMEROUS TO MENTION, WHO HAVE 'WALKED THE WALK''............FROM THE FIRST DAY OF THAT HORRIBLE NEWS................TILL FOREVER...............BECAUSE IT DOES NOT END...................YOU JUST LEARN TO TAKE IT 'ONE DAY AT A TIME'................I CAP. THIS BECAUSE I AM SHOUTING OUT TO ALL YOU WONDERFUL WOMEN..............GOD LOVE, AND BLESS YOU ALL..........................WE ARE ONE IN OUR BATTLE.............

Suzybelle

I snorted when I read kira's "Cancer took my breast but opened up my heart" article.  Hahahahaha!!!!  Don't you just love treacly, moronic titles like that? 

"Cancer took my breasts and made me want to stick a pen in your left eyeball."

"Cancer took my breasts and staring at my flat chest is not going to make them spontaneously reappear, you pervert."

"Cancer took my breasts but not my sarcastic, smarty, mouth.  Aren't you glad????"

Wonder why I am not writing for O? 

lovemyfamilysomuch

You should be!  xo

Going for my first appt on thursday. . . .

kira66715

Suzy, talk about snorting--I WISH you were writing for Oprah. I wanted to hurl and not just the magazine...they will not spontaneously reappear you pervert!!!! --man, you have a gift!

Ducky--thank you for the message. It does not end, and we need each other.

Kira

duckyb1

Your welcome Kira..................................I could never have made this journey without you all by my side.................I will be forever grateful for the love, compassion, enlightment, and true friendship I have received..................amazing thing is ..............I could pass each of you on the street, and would never know that "there goes a woman who helped save me"...........your all wonderful, and regardless of how this ends for me, I will never forget each and everyone of you.

Outfield

Didn't see the comma at first between "vodka" and "brownies."  I was trying to figure out how the alcohol wouldn't evaporate in the baking.

I've gotten better about answering when people ask about it.  Yes, most of the time it's not their business.  But it's not like I'm just going to forget about it if they don't bring it up.  Last year in October, I was still in chemo.  I didn't have lymphedema yet.  This year I am so conscious of how you never see a sleeve in any of the promo stuff for anything.  If it can't be cured, I'd rather it be better-known to people in general.   

Anonymous

Suzy, your comment, " Cancer took my breasts and made me want to stick a pen in your left eyeball" made me laugh until tears were running down my face. That just struck me as incredibly funny. Thank you!



I was just thinking the other day how much I dread Pink October. Ugh!

Binney4

Okay, fellow LE activists, time to gear up! Pink Stupid October is our golden opportunity to get the word out about BREAST CANCER'S DIRTY LITTLE SECRET: LYMPHEDEMA. Let's put our heads together and think of ways we can put LE (and other long-term side effects of treatment like RIBP and post-mastectomy pain syndrome) on everybody's radar.

In the past, we've had women call their local papers and volunteer to be interviewed about the "real" pink reality -- wonderful factual articles about what LE is and what it involves. Or maybe it's a good time to visit your local face-to-face bc support group and give the newbies a heads-up about risk reduction and what to watch for, and cheerfully let them know that dealing with it early can stop progression. Other thoughts???f

I was really interested in Outfield's comment about never seeing a sleeve in all the Pink advertising. We could pick an advertiser or two and blitz them with demands...er...requests to recognize our reality in their advertising.

All suggestions welcome -- even getting ourselves a supply of inkpens and...uh... Suzy, I like the way your mind works!

Onward!
Binney

NatsFan

Suzy - I'm sneaking a look at this at work, and you made me laugh out right loud!!  Hard to pretend it's work related when you're laughing! 

Suzybelle

Glad everyone enjoyed my O articles.  I am digging Binney's new holiday, PINK STUPID OCTOBER sooooo much.  I have already started wearing my "Think before you pink" button.  Several people asked me about it yesterday and I had the opportunity to preach at them.  I'm sure they were sorry they asked. 

I am assisting my LE therapist Saturday - she's giving a talk to a bunch of medical folks about LE treatment, and she's going to bandage me.  Then I will answer questions about LE and how it affects my life.  I will try hard to appear professional and sane.  Most of you know that's going to be a stretch for me.  I promise to do you proud and spread the word about LE.

However, I will be wearing my new boots with red roses and sparkles all over them.