So sick of this.

Suzybelle, I am so sorry. I get sick of this and my LE is only mild. But I still get sick of the sleeve (and am totally bummed to have read the the lymphediva sleeves aren't long enough for those of us with gorilla arms). And I really get sick of the constant, if mild, ache in my shoulder/arm/side, because it alwasy reminds me of cancer/surgery/LE.

As far as swimsuits go, being a tad older than you, I am happy with a one piece tyr fitness type suit. I like to think that I just look like my 20 year old daughter who is a competitive swimmer and has a very flat (due to genetics and being slim) chest. So I wear that with a floaty sheer cover up and call things good.

And as far as the sales clerk, well she asked for it! You gave a brief polite answer and if it wasn't enough for her she deserves to feel squirmy!

I hope you get a cool evening with people you enjoy. 

I hear all of you.  I am getting ready to "suit up" and mow the lawn.  It's a very small lawn and I use a small push mower, but I really dread it.  I haven't had a serious flare since June of 2005 so while I am grateful that I am doing so well, I really, really hate this time of year and its hot, humid weather.  Kira--A broken hot water heater on a holiday tops all.  I am so sorry.

Sue 

Oh shit, sweetie, I'm so sorry for how you are feeling.  It's the beginning of our dreaded season and all the feelings we've buried in the snow are bursting forth in radiant colored vomitous crap!!  And somehow we expect ourselves to go through it with smiles on our faces.  NOT!!  So try not to pile more manure on your pretty little head for telling one nosy cashier the truth. After all, she asked.

Wow! I can so relate to this! I have just started to wear my sleeve and gauntlet in public with short sleeves on,so it's now obvious. Each and every time,someone asks me "what's wrong with your arm?" Even the bank teller at the drive through asked...WTF is right! If I say lymphedema more questions arise. I now realize that boundaries and politeness were not taught to many people!!! I hope everyone was able to enjoy the long weekend!

I read this thread because of the title, "so sick of this," and I swear, you people are some kinda funny, almost every post had a gem, just loved reading this.  I'm a Feb chemo person and still in the middle of all that, and I'm sick of it, too.  I heard somewhere that you get used to this, but i do not want this to be my new normal.  I shuffle and lurch, I'm exhausted, sleep all the time, nervous, lots of pain, digestion goes all over the place (literally), and I have really had it.  I do not understand why they can't figure out how to try to kill us with a little more comfort, happy pills, if you will.  Like I said in another post somewhere on the web, I think everybody over the age of 50 should have morphine in their medicine cabinets.  My swimsuit apparel will consist of a dark t-shirt and cut-offs for beach wading.  I'm fat, I'm short a boob, apparently I'm now permanently allergic to the sun, so maybe someone should come out with a line of swimsuits for the appearance-impaired.  I mean, couldn't they maybe bare that part of us, do a cut-out?  It's no longer there, so why not live like men do??  GG

Summer clothes shopping really does suck for those of us who have had mastectomies and no recon.  I can deal a lot better in cooler weather when things tend to be less bare.  I've been shopping around online for another swimsuit, and ya know what gets to me?  The models with the perfect boobs and cleavage hanging out of their "mastectomy suits"!  I'm talking about Lands End, but it's certainly not the only place I've seen it. Do they think I'm stupid enough to think their suit will make me, who is totally flat and scarred on one side, look like that? If those suits are as low-cut as they appear in the photos I can't even wear them.  And more importantly, do they really think I want to look at all the perfect boobs while shopping for a mastectomy suit? Stupid and insensitive of them, I think!

Oh Suzy I used to love the summer too.  But now........not so much.  In the winter it's easier to cover things up when we go out which helps avoid the incessant questions.  (I know it's human nature to be curious but it does get tiresome.)  Now we have to be careful of so many things plus when I wear my sleeve I like to cover it simply to protect it from snags, dirt, etc.  I thought I was a hermit before, ha, weren't nothing like I am now.  Blech, the whole thing sucks.

Dogeyed, hello! I can't resist offering you a couple of pages of lymphedema risk reduction information. Knowledge is power, and where lymphedema is concerned, knowledge can be mighty hard to get from our team of doctors, despite the fact that we are ALL at risk.

http://www.lymphnet.org  (See their Position Papers on risk reduction, air travel, and exercise)

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

There you go -- arm yourself with information. Hope the remainder of your treatment goes smoothly, and that you never have to join the ranks of our Sorority of Swell!
Binney

Suz, don't you just HATE it when you reveal your feelings to someone who's never dealt with any of this crap and then they say, "Well, at least you're alive."  I swear I wanna punch 'em.

Hymil. You made me laugh and laughing is good!!!!!

"I have nice ankles"

LOL................

It's bittersweet laughter.

I always used to think that my arms were one of my best features. I have these cute little wrists and always thought that my arms were delicate.

Now I look at women's arms with a wry and heavy heart.

I did notice an elderly woman at church on Sunday and for a trim ol' gal her ankles looked like elephant ankles. I realized that whatever had caused her affliction had also seen her to old age and I exhaled.

Grace-in-action.

To be philosophical, sufficiently-zen-accepting enough, not to have this physical vessel mean so much would be one thing, but to have my aching arm impact my day-to-day is all together another.

Living and being alive a gift to be sure.

To continually be restricted by something so outta left field takes more insight than I have in the summer time.

I do have a brilliant idea though and will get to documenting it and sharing shortly. Stay tuned.

xx00xx00xx00xx

The other thing, is that I remind myself that I'm a granny and that it all comes down to perspective and deplore that LE has raised it's ugliness for some of you young, spry babes.

Daffodil, not offensive at all, IMO, but very funny.

My mother sent me a vest that has a mosquito repellent, but I was afraid to wear it--I'm ragweed allergic and sometimes the repellent is permethrin which cross reacts. Oh, I should just get over it, and wear it.

Definitely remember a horrible evening, a graduation party in a house in the woods, and I hid inside and demanded that we go home. Luckily a few people came in to join us. Sux

Kira

Well, I am way past that Oregon Trail.... on an island in the Puget Sound..... do have lots of mosquitos though come the 2 weeks of warm weather in August!!!! EXOFICCIO clothing is not sprayed with chemicals, as far as my research has shown me.... it is impregnated into the cloth that the fabric is made from, is very safe, and apparently lasts for over 60 washings ( I wouldn't pound it with a stone and lye....). My DH is a fly fishing guide, and swears by the stuff to keep from being nipped at. Just bought a couple of cute, gauzy tops at their shop at the Seattle airport... I'm sure they are on line somewhere! Along that thought line... I wonder if there is some sort of a fabric wash, to wash sleeve and gauntlet in to make it less appealing to bugs.... Thoughts anyone?

For me, I think the bathing suit issue, as well as LE, represent a number of losses and a reality check about the stage of life I'm entering. At the same time I was going through my bilateral mastectomy and recon with implants, I was also going through menopause. Combine that with a painful experience which really limited my ability to exercise and it's amazing how your body can change. The implants were supposed to be like some effing "prize" I got from having BC. Those bathing suits were purchased to celebrate my new "boobs", and I got to wear one Once before the LE kicked in. All the issues with my implants eventually led me to deconstruct, and mostly I've been so happy since I'm now pain free. I was sort of surprised to find myself upset about those stupid suits, but it's related to the loss I feel about the recon. This is my third summer with LE, and I honestly think there will always be some annual grieving that goes along with the season, as one can't help but acknowledge how life has changed. I have made great strides in coming to terms with my (once again) new appearance, but I will always miss the feeling of freedom to go anywhere I pleased with no worries.



I think it's normal to experience this seasonal sadness. My best coping thoughts about my summer limitations and no longer being a "summer girl" are to think about how many different things there are to do in life. Because I can no longer do X, then I will just have to find new forms of fun and entertainment. Creativity has certainly helped me get through the the BC/recon saga, and I'm sure it will help me figure out new ways to enjoy life. I try to focus on the things I can do, vs. the things I can no longer do. It's the only way I keep my sanity and feel hopeful about my life and the future.