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

Stanzie - I am so sorry to hear you are suffering so bad! Praying for you.. 

Ladies - what do you think??? Should we start a board called: "Why do things always happen on the weekends or after hours?" We could make it a place to go when you don't know what to do?

Hope everyone had a decent weekend...the summer weekends are kind of a LE minefield.

GMA foley....I totally hear you on the weekends and afterhours.........

all of my flares tend to show up around 8-10 pm.

I'm gonna throw one bit of general advice out there....sun hitting a sleeve seems to cause me problems in the spots where my LE is.

There is a half dollar sized patch just below the band that is especially vulnerable.

Dark sleeves seem to amplify this effect.

In the daylight hours I try to wear a light-tone sleeve, especially the Juzo silver which is designed to not heat up, and I wear a white or light toned shirt over it.

It's all a great big pain but it has cut down on the number of bright red hot spot flares I have had, and fewer cellulitis scares. 

I went to the beach yesterday and despite my sunblock and coverups I still ended up a bit red and swollen. The patches where I have fluid are soooo sensitive to the sun. I really have to remember waterproof sunblock!

Still swimming in the ocean felt glorious. It was nice and cold on my arm.

Hugs to all

Stanzie, how are you doing? We're all hoping you've gotten some help and are now resting more comfortably.

Gentle hugs and get-well prayers!
Binney

My sleeves are worn out, I won't tell you how long it's been since I ordered new ones. ;p I ordered for the first time the ones that do NOT have the silicone on the top. In this heat, I'm getting a nasty rash from the sweat under the silicone. How badly do the ones without the silicone slip down? I'm looking forward to no more rash but would like to know how well they stay up without the silicone?

A little humor does us all good . So what do I name my swollen boob?? "My Big Honeydew?

GmaFoley, maybe you should call it "My Big Honey-Don't"

Leah

I'm so glad we started something to make us laugh on a Monday... I like your Idea Leah - "Big Honey-don't" it is!

Ok - down to earth for a moment - then we will start the laughter again:

Update from my fall:  My arm is still ok and healing well but I noticed the ribs right under my breast have been hurting all weekend (since the fall). I had that pain there - its part of the truncal LE but it really has gotten worse.. I put my swell pad on but I'm not sure how much help it is.. You think it is from the fall or just all the heat we have had this weekend?

My arm has not seen daylight in 16 months so I guess I will call it midnight!

Okay, I'll call my truncal DoubleWide.

Ducky, I am sorry you are still having fit issues. I hope your new therapist helps sort things out and finds a garment that works for you.




Re the fit of sleeves, gloves, etc, this spring my first custom Jobst sleeve and glove fit great when I got them. I immediately ordered a second set in a different color, and fit was same. Unfortunately, there was an issue with a bump in seam, and my therapist ordered an IDENTICAL replacement. Meanwhile, while waiting for replacement glove, I wore the defective one off and on and washed a few times. Lo and behold, the seam issue appeared to be gone. When I saw therapist for appt she gave me replacement glove and I tried on. A couple of the fingers were a smidge longer, but it seemed fine otherwise. I kind of figured these things aren't an exact science and said whatever. I gave her "defective" glove, and while driving home wearing the replacement, I frantically called therapist and left message to not return "defective" glove. I emailed her, too. The fit of the replacement was so off. It wasn't wide enough in hand, and within half hour of wearing I could feel fluid collecting in side of palm. It also felt like it was squeezing and collapsing my palm, if that makes any sense. Next day at appt, she said she had not returned glove and I gave her back replacement glove to return and she gave me back "defective" one. She was very concerned that first two sets had fit perfectly but this third glove was so wrong. She said that in the fall when I order another set she will remeasure and make sure that doesn't happen again.




So, with the same measurements and two perfectly fitting sleeves and gloves, suddenly a third glove is completely effed up. This is what scares me so about getting garments. I feel like I was incredibly lucky with my vest and first two sets of sleeves/gloves. Ducky, you have my total sympathy with your fit issue!

I have had problems with clothing like that and found out the same underwear was made in two DIFFERENT countries.. I wonder if that could happen with our sleeves and gauntlet?

Binney, I saw the therapist today and he thought it was the combination of the fall and heat... Its amazing how he can get that fluid out! My pain level, in the rib area, when I went in today was about a 7 and after I would say it was down to a 4... Now if I could get DH to help me with that area.. things would be great .. How do you get the side and back area around the ribs without help??? Bummer..

Well, I'm "speaking out" tonight at our Breast Cancer support group. No one in our group knew anything about truncal LE. I'm bringing some info to at least get them thinking... 

Hi Everyone,

Health insurance in 2011 paid for 2 Bellisse compression comfort bras labeled (size: 44 DD/E), and now I realize that 1 bra should be labeled (size: 42 DD/E).   No exchange or return policy.   I'll try to purchase next bras in a store.   I am going to write a letter to Bellisse Compression Bra Company in Vermont.   Yes, rattle their cage!

Leah, when my first sleeve and glove fit so well, that's exactly why I ordered another set immediately. I half-jokingly told therapist to tell DME people to tell Jobst to have the same person make my second set. I have no idea how many seamstresses there are, but my second set did indeed fit exactly like the first. Someone from Mars must have made my third glove.




Also, when I called Solaris to register my night vest, I was vocal about how pleased I was with the fit of the garment. I have no idea how many seamstresses they have either, but I told the person on the phone I wanted the person who made my garment to know how much I liked the vest and how comfortable it is. I wanted to make a point, because my therapist went out of her way to be quite specific about measurements and cut of vest. I also hoped Solaris would take note of who made my garment and acknowledge them. I think people deserve to get positive feedback when they do something well. Whether this is such a big operation that those kinds of compliments go nowhere, I have no idea, but it's worth a try since so many of us have experienced receiving ill fitting garments.




GmaFoley - I hope you are feeling better soon! Have you been told about using a paint roller with pad to help reach those difficult areas? After you do your node clearing and initial clearings, you can use the roller to bring the fluid down the back. All it takes is a light touch, so it's a great tool!




Teka, they definitely should be told they mislabeled the bras. Did you open them at the same time? If so, I would think your insurance co would go to bat for you. I know processing through insurance co makes returns more difficult, and garments that are "used" can't be resold. However, I bought an Anita compression bra at a local fitter, had them take the tags off and I wore the bra home. Four hours later I went back to store and told them the bra had caused a flare and I didn't want it. They gave me a hard time and told me they can't resell used garments. I said I didn't want the darn thing and didn't want to pay for it. The store person was annoyed but she gave me a store refund, told me to take the bra, too. It counted as one of my allotted bras under my insurance though. It didn't matter since I never purchased another bra again.




Speaking of insurance and bras, if I find a shapewear camisole/tank that I wear for truncal compression, can I get my insurance to cover? Are there certain brands that are covered? And if they don't fit me, can I get my insurance to cover what does fit? I can't believe I haven't thought about this before, but I was in transition from implants to deconstruction and then post surgery period over a year when my body continued to change. Now that I pretty much know what I'm working with, it would be nice to get some kind of coverage of garments. I don't wear prosthetics, so does that mean I'm out of luck?




Binney, my therapist says that's not as common anymore. I asked her that when I was ordering black sleeve and glove, and she said not to worry. I think she said it used to be something about the dye process? Or maybe someone here said that. Anyway, I ordered my black set first, and it was fine. Second set in beige fits exactly the same. Fabric has same feel to it, too. I remember the discussions here about the black fabric, especially with the night garments. I was hesitant when I ordered my night vest from Solaris. I wanted to order black but couldn't bring myself to do it. Same with the royal blue, as I recall someone had problem with that color, too. All I could remember was that one of the folks here who had issues with colors said the teal fabric felt softer. Wasn't the color I would have chosen, but that's what I ordered. Have to say it's much prettier than I anticipated. Most importantly, it feels very soft and comfortable.

Mondays and Tuesdays are my weekend. I haven't been to a movie in six months or more and just wanted to get out of my house tonight. It feels like a prison in the summer...I hardly ever leave, work mostly from home. Well...I was looking forward to getting out of the house. Went to the mall, it felt cool in there. Went to the movie counter located in the mall, paid for my ticket, walked into the movie lobby and it felt a bit warmer in there but didn't think much about it. Walked to my theater, opened the door and I walked in and warm, humid air met me. What? That's not right. I hadn't worn any compression, was looking forward to a cold theater and a night free from compression. I sat in my seat waiting for the movie to begin, previews came on, kept waiting for cool air. There was none...just warm, humid, stuffy air. As I sat I could feel and see my fingers swell.



I got up, asked to talk to a manager...they were very nice, acknowledged it was warm and something needed to be done,refunded my money and gave me a free movie pass. At first I was really upset. I can't even go to a movie without being reminded of my lymphedema? A big grrrrrrrrrrrrr for sure! And yet too I am proud of myself for standing up for myself. I would have never stood up for myself like that before bc...maybe because I didn't have to like I do now....but standing up like that was a big step even if I couldn't enjoy my night off like I wanted.