GRRRRRRRRR I HATE LE..........
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@ tina...sorry,not sure what that means.
It is not like the Silverwave ridged zig zag fabric in the "Silverwave" sleeve. It seems like the same weave as the regular Juzo, but a little thicker and more "slippery".
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Carol, just to clarify, wetting a sleeve you're wearing adds compression, which you may or may not want to do. If it's an old kinda saggy one, no problem.
On the other hand, hanging out in a wet sleeve is riskier for us than wearing a wet bathing suit because our LE quadrant is more susceptible to infection and fungal beasties (which can thrive in a warm, wet, close environment).
So...it's tricky. But if you understand what the potential problems are, then hopefully you can avoid both those issues and still wear garments when you're SUPing about in the sea.
And -- YIKES! -- Binney is for sure not always right!
I do have a lot of LE experience, but most of that came from bungling something up. (Like, for instance, early on I wondered how flammable we are when we're wearing these idiot garments, and then one day I absent-mindedly laid my gloved hand on a stove burner to check that it was cold before I left the house, and...well, it wasn't.
It melted holes into my glove in the exact pattern of the stove coils. But it didn't catch fire. So I was enormously relieved, and at the same time both gob-smacked by my own stupidity and horrified to have ruined a pricey glove. So, see? The dumber you are the more you can learn about these things.
)At any rate, I always, always hope that my bumbling around can spare the rest of you a bit of grief here and there.
Let us know what you come up with, Carol!
Binney0 -
"The dumber you are the more you can learn about these things." You are so funny, Binney!!! Thank you! That just tickled me so.
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OK, Binney, then we'll amend my statement to say that you are always right..eventually! And that learn-by-mistake method is proven to be one of the sounder adult learning approaches. Thank goodness you are so generous in your willingness to share after a miss-step.
It's still too cold for paddling sports here, so I have time to think. Maybe an answer is a lighter-fabric UA shirt. It's a little less compressive, but it dries quite quickly. I have one UA that's made of a llightweight weave, but surprisingly it's as compressive of the other UA shirts I own that are thicker and more closely woven. A long sleeve might help with the dreaded mosquito problem, too. But glove or gauntlet? Seems like a real compression glove or gauntlet is the only option. I'll be gripping a paddle for hours, so it would seem risky to go without something.
I just hate it when I have to slow down and think about imposing limits.
Oh, and better to have burned a coil pattern into your pricey glove, than into your palm and fingers!!!
Carol
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I have gotten mosquite bites through my compression shirt. Those durned mosquitoes! Just got one tonight walking my dog.
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Carol, you could try Isotoner therapeutic gloves, about $20 a pair. It's going to be another trial-and-error process, I'm afraid.
LE is nothing if not creative...
<sigh!>
Binney0 -
hi ladies, im back, reading getting ideas.. im doing allright in the heat of so fla; but summer is the price you pay to live here!!!im dreading the coming mnths.. ive gotten more serios about my truncal, and moving around a bit more, dispite the hypothyroid problem..s taying in bed really, aggravates my le..@Binney: i, too, am so glad you share your mistakes, and their solutions.. im sorry you have to pay the price for my education, though....3jays0
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3jays, good for you for working on the truncal. Especially now as summer approaches we have to take more time to tend to our "swell" selves!
Summer, bah!!
Binney0 -
Ladies: Guess I'm really here now after reading for year. What's the saying - I have "skin in the game". My exchange was in September and I've never been able to go w/o a surgical or athletic bra 24/7 since that time. Diagnosis was finally on Friday & first PT session today. There's trucal & chest LE, but also mild involvement in the left (non-dominant) arm. Too bad it wasn't picked up at my appointment with the LE DR in November, but I do understand I was only 2 months post surgery & he thought it might only be post surgical swelling. And unfortunately I've flown since.
Started today with lots of measurements, an introduction to the program, some "long" wraps for chest to wear under my sports bra & some foam pads. The doc wants me to go ahead & get the Belisse Bra. The PT said I could try some camisoles. I have had reconstruction so I'll need something w/provisions for the foobs. PT will teach me MLD. Apparently she'll teach me mainly to move the fluid down to the groin instead of up. She says wraps are not needed for the arm for now, but will write an RX for sleeves. She's recommending that I wear sleeves on both arms for "active" times or flying even tho only one arm is affected. Do you all agree? And I'll have to find out what "active" means. I asked about gloves based on posts I've read here, but she said to try just the sleeves & watch for hand swelling.
I've also been reading the 'Kick LE's Butt' thread & hope to get back to exercising as soon as I can get rid of the constant ache & pain. Used to walk 3-5 miles 6 days out of 7 and work out at the gym for an at least an additional 40 minutes. Now have to hold up the left foob & whimper after 30 minutes and I haven't been willing to try weights. I'm tired of being a slug (with reference to the bug & the windshield)
Thanks for your knowledge & support.
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MinusTwo- I think we're almost living parallel lives. My first eval they thought possible post surgical swelling after my revision surgery. Today was confirmed 100% LE. We share lots of other commonalities but mostly that slug part.
So after waiting 6 weeks I finally had my appointment with Binney's PT, Jane, and loved her. (She was worth the wait!) She was not thrilled with what she has been seeing and hearing from my therapist. Basically, most of what she had been doing and recommending to me was wrong. She told me my LE was mild but Jane says it is moderate. She told me I only had LE in one arm from shoulder to elbow. Jane says it's it both arms from just above the wrists to the shoulder as well as truncal. She said I shouldn't have been doing any regular PT until I get the swelling under control and I have sleeves. And she couldn't believe the other PT hadn't given me a full exam or done full measurements. Kind of depressed knowing it's worse than I thought (though it explains the pain I've been having) but thanks to Binney I know I'm in good hands now.
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Aw, Kate, that was a whole trainload of bad news!
But knowing you have someone on your side who's taking charge and setting things right is such a huge relief, yes?MinusTwo, I can't WAIT until you get into your therapy and the pain is reduced. Pain rots! In my opinion, yes to your question about garments for both arms, since you've had surgery on both sides and are obviously not "immune" to LE.
Wear them for flying and car trips both, and any unusual or strenuous activity (like moving furniture, vacuuming, mowing, shoveling, exercise). Here's an article about why you'll want to consider hand protection (gauntlet or glove) as well. If you're comfortable talking with your therapist you might want to run it by her too. Your call:
http://lymphedivas.com/lymphedema/gauntletandsleeve/If your insurance is going to generously provide you with a Bellisse bra, it might be worth the try. If you have to pay a chunk of it, though, there really are other options you might want to try first. Just a thought!
Hugs, hugs!
Binney0 -
thankfully, the left arm has finally reduced down back to almost the original size. hooray! best to you all. still working on the truncal. LMT at massage place i go to amazingly has one person (only) certified for MLD and will see her friday evening for an extra session in between next week's OT appt.
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Binney- It's definitely a relief. I feel like I'm moving in the right direction at least. BTW, Jane had wonderful things to say about you, too!
Not sure what the Bellisse bra is but was wondering if any of you have some bra recommendations that are wirefree? The ones I have tried just don't seem to give me enough support without being too tight. Sports bras don't work for me. (Hope this isn't TMI but ever since my NS the headlights are "on" and I need something with some coverage which most sports bras don't seem to have.) I pretty much have to wear a bra 24/7 due to discomfort from my implants. Any ideas or recommendations?
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Sears sells a bra called apostrophe intimates....I like it much better than the genie/ah. They are cheap, comfortable, and durable. Perfect for sleeping in. Nice wide straps and a v neck.
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Kate and Minus Two--So glad to hear you are getting proper care finally. And don't we all have good things to say about Binney who has steered so many of us in the right direction!
Kate-I got good bras at the masectomy bra center. Is there one near you? Decided I did not need a Bellisse but did fit me for several with good support and light compression. My insurance pays for six a year. I was unable to wear regular sports bras but they fitted me for two special ones and I am very comfortable in them. They did all of the paperwork--getting the scripts, etc.
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cookie and Becky- Thanks for the bra tips.
So woke up this morning with the realization of what this all means and am royally ticked off. I'm guessing this is part of the process? That a dx of LE comes with it's own stages of grief? (I think I skipped a few steps and went straight to anger or maybe denial was when I was working with the other PT?) I think it's mostly that my "pain plate" is already full with some other medical issues and now this. Is the pain ever addressed with LE or is it all about prevention?
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Kate, grieving is a good way to put it. Controlling your LE should help with the pain (but I hope Binney will weigh in on that one). Here's a thought: Can you find an LE support group nearby? Maybe that wonderful therapist you found can help you locate one. Even if you can't go to all the meetings (time just evaporates when dealing with medical issues, no kidding!), you might find some great info resources and most of all, some great in-person support in dealing with this bodacious process.
I recently found a wonderfully supportive sports bra - Moving Comfort Luna --bought on Amazon, and they'll take returns if it doesn't fit right. This thing really holds me in place, with great coverage, but without the smooshed uniboob approach. Also found a Lily of France sports bra at Kohls, not expensive, and while it doesn't hold me as still as I wanted (to do some running), I kept it because it's quite supportive and comfortable as a regular bra. And it works great for cardio walking, elliptical, etc. where bouncing is less of an issue.
It takes a lot of energy to do a lot of bra trying-on, and I think I have settled on using Amazon, so I can order four or so at a time, and wear them with tags on for at least an hour to find out how they really feel, compared to just 5 minutes in a dressing room. And of course, the mastectomy bra places such as Becky suggested are great resources. My local resource doesn't do much with sports bras, however.
Keep up your spirits! Knowing what you're dealing with is a giant step toward managing your LE. Anger is understandable--we're all PO'd about how LE is not well handled through all stages of the cancer/surgery/rads process, before, during and after. If misery loves company, you've got lots of it around here!! (the company, I mean--hopefully we help each other climb out of the misery!)
Carol
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Kate, grieving is a good way to put it. Controlling your LE should help with the pain (but I hope Binney will weigh in on that one). Here's a thought: Can you find an LE support group nearby? Maybe that wonderful therapist you found can help you locate one. Even if you can't go to all the meetings (time just evaporates when dealing with medical issues, no kidding!), you might find some great info resources and most of all, some great in-person support in dealing with this bodacious process.
I recently found a wonderfully supportive sports bra - Moving Comfort Luna --bought on Amazon, and they'll take returns if it doesn't fit right. This thing really holds me in place, with great coverage, but without the smooshed uniboob approach. Also found a Lily of France sports bra at Kohls, not expensive, and while it doesn't hold me as still as I wanted (to do some running), I kept it because it's quite supportive and comfortable as a regular bra. And it works great for cardio walking, elliptical, etc. where bouncing is less of an issue.
It takes a lot of energy to do a lot of bra trying-on, and I think I have settled on using Amazon, so I can order four or so at a time, and wear them with tags on for at least an hour to find out how they really feel, compared to just 5 minutes in a dressing room. And of course, the mastectomy bra places such as Becky suggested are great resources. My local resource doesn't do much with sports bras, however.
Keep up your spirits! Knowing what you're dealing with is a giant step toward managing your LE. Anger is understandable--we're all PO'd about how LE is not well handled through all stages of the cancer/surgery/rads process, before, during and after. If misery loves company, you've got lots of it around here!! (the company, I mean--hopefully we help each other climb out of the misery!)
Carol
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And believe me, the anger can resurface from time to time. It's such a learning curve for all of us. I think I am the windshield today (after several buggie days). A BCO friend and her DH are coming up from the States for lunch. They live about an hour and a half from us. That's making this day so much better despite the fact my arm is wrapped. Perfect timing on their part.
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Sorry...have to have a little rant.
I just called my BS's office to find out the proper procedure for having BP readings done (ankle, calf or thigh, normal readings, etc) and her nurse told me I only had SNB so didn't need to worry about LE even though I just got done telling her I had been dx in both arms and truncal. Still continued to argue with me that it wasn't a big deal even though every time I've gone in there they have done the readings in my leg (just couldn't remember how they did it). She finally told me the ankle and the readings would be the same as my arm which I don't think is right. I think she was just trying to get me off the phone. And this is my BS OFFICE! How the heck have you all kept sane through this?
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Kate, anger is exactly where I jumped when I got my diagnosis of LE at 2months post BMx. I hadn't even gotten my head around the Mx and just as I thought I was coming out of the fog, the LE reared it's ugly head and I fell into a mix of deep despair and extreme anger! The only problem is that I couldn't really get any closure on just being angry because in the end I have no idea why I got it or how it happened or who was to blame. I found that what eventually helped was time and those kind people along the way who were willing to listen to me rant and rave and allowed me to feel validated. the lack of validation from my drs especially the BS is probably what upset me the most. I kept replaying over and over the "if only" and "what if". I do believe it was the kindness and support i found here that allowed me to eventually take it a day at a time. I still have dark days and I still want to tell off my BS - but in the end, my DH reminds me of the fact that I probably wouldn't do any of the sx differently. Please use us and this thread to rant and scream and cry all you want. It is exhausting but you are not alone.
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I'm in pain and flaring more in my trunk and arm but at least I feel like there's a reason. Shingles confirmed and I just find it so ironic that it had to be SNB /LE side. So I have shingles freakin' pain and LE swelling pain. I'm a barrel of laughs! On valtrex and Tylenol and at this point, think I'm just crawling back into bed. What's the use of LE control right now. Gggrrrrrrrhhhhhhh!!!!!!!
On one positive note, the NP who diagnosed me was really kind and for the first time I didn't have to fight to not use my arms for BP. She was so lovely and accommodating. It gets so tiring to have to fight all the time about it.0 -
Kate, I am going back to the center where I was first treated and developed LE, and the LE therapist told me it couldn't be LE as it never starts in the hand, and my surgeon told me she wasn't responsible to help me, and I'm giving a lecture on LE to the breast surgery fellows.
Hmm. Do you think I have unresolved anger issues???
I'm working so hard to make it "just the facts".
As I'm working on the slides, I'm thinking of the few places where a different approach would have made a difference: post op instructions, a good PT early on, LE risk reduction instructions, treat the seroma. I will include those as general guidelines for the fellows, but I need to be very careful to be as objective as I can be.
I just finished the STAR oncology rehab module on LE, and it's full of mistakes. So, that's the gold standard of oncology rehab being sold by Julie Silver MD. It's a start, but the mistakes were glaring: 1) don't treat stage zero LE, 2) diagnose LE by stemmer sign only, 3) no hand protection in compression garments, 4) use of microsurgery for LE prevention--I'm not kidding here.
I'm 4 years into this journey, and anger and grief kick in periodically, or maybe simmer in the background and then flare.
There are a few things I really wish I knew: not to start stretching overhead post op day 2, to treat an axillary seroma, not to go to a PT who "said" she could treat LE and get repetitive motion exercises, and to have avoided heat and bug bites.
But, as this LE hasn't disappeared, I think I likely would have ended up with it anyway, but I sure wish I didn't have even the slightest questions to peserverate over, as I wrap every night.
I often wonder why I don't just fade away from these boards, but the women here understand inherently and I need to badly to be understood. Not pitied, not horrified, not ignored, not infuriated at being implicated or just flat out perplexed, but understood.
Kira
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Thanks everyone for listening and understanding. That helps....a lot!
Catherine- I'm so sorry to hear about the shingles. I know secondhand how painful it is because my Mom has it. That is just so freakin' unfair! I don't blame you for wanting to crawl into bed and pull the covers over your head. Did your doctor talk to you about the vaccine? Even though you already have it I think it's supposed to prevent future break outs. Hope the meds give you some relief soon. (((hugs)))
kira- Are you bald (hmm, maybe shouldn't ask a BC patient that)? If I were you I would have pulled all my hair out by now! The total ignorance with this is mind boggling. In a small way it's like my fibro. In the beginning I was treated like I was mentally ill because no one would even acknowledge it was real. LE is starting to feel like that to me and I'm a newbie! Thanks for keeping your sanity and plugging along.
Edited to say: I hope you don't ever fade away from BCO because it appears we need you and Binney desperately!
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Kira, don't you dare think about fading away from these boards! Your kind help is what keeps us from losing that sanity!
Stemmer's sign--that's the one where you try to pinch the back of the hand behind the knuckle, and if you can't grab tissue because it's swollen, that means LE--right? But--what if your LE is just in your upper arm and/or your trunk (raising my hand on that one!!). I have zero medical credentials but yeesh, even I know that's not the only sign of LE! Or is there a stemmers for other body parts?
Thank you for being not only in a position to look at and critique poor healthcare information, but for your willingness to do so.
Carol
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Well, between my mother breaking her hip and me losing my job this afternoon, it's been quite the week.
It's a long ugly story.
I'll still be giving that lecture to the breast fellows.
Now, I'll just have way more time to work on the slides.
Kira
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Kira - Losing your job this afternoon????!!!!!!
I'm so sorry.
Hugs to you. (Shaking my head because I can't think of anything else to say).
With that and your mom ... and everything else ... I'm just so sorry! xo
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Awww rats, for Tina, Catherine, Dawne Hope, Jo, Kira, and everyone else who is really having to deal with crap, LE and otherwise. I wish every one of you better days, soon.
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And Kira--here's a thought: Your REAL JOB is being a wonderful human being, which you do so incredibly well. As testimony, I just need to remind you about the literally hundreds of women who benefit from your smart, timely, and no-nonsense LE help here. No way does that minimize the sucker punch of losing a job, of course. But if you need some emotional propping up, think about your LE-forum cheering squad!
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Kira - I totally second carol57 ... we're here cheering you on .... I pray you find a job where you'll be respected and your gifts honored. xo
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