GRRRRRRRRR I HATE LE..........
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Jo..............you mean aside from it choking me.......................not so far, but with LE, I'm sure that is coming.................................Mine catches me at my neck................I am only 5ft, so when it crosses my body it is right in line with my neck.
I told my kids, I won't have to worry about going through the windshield (if that is wha tthe purpose of the belt is)...........................my head will get cut off, and go rolling across the hood, and be an ornament on the car when they find me...................I CAN JUST SEE THE PAPERS THE NEXT DAY........................SEAT BELT SAVES DRIVER FROM EJECTION, BUT WE'RE STILL TRYING TO FIND HER HEAD...................................
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Jo...................yea, let's show them our scar.......................that would clear the courtroom, wouldn't it...........................
the little thing doesn't help me either.................all that does is put it at my neck.........if its higher, it would be over my mouth and chin.......................that wouldn't work either, cause then I wouldn't be able to shout my obsentities at the other drivers when they piss me off..................
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I have been without my "wraps" all day..............................Can't do shit with them on, they get wet, and that really annoys me...................guess better get on the stick, and put them on......................uggggggggggg.
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Ducky I feel your seat belt pain, I am 4' 10". When the seatbelt really bothers me, I put the shoulder strap under my arm, I know it isn't supposed to go there, but it is better than not wearing it at all.
Sheila
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Hey seatbelt people I am with you. My belt hits my neck at the lowest level. I keep pulling it down to my shoulder. Right before my surgery a cancer support group gave me a heart shaped pillow they had made at a retreat. My nurse coordinator said it was to put between my breast and seatbelt to alleviate the pain. But mine is on the right side and seatbelt does not comes close. I love the pillow though.
Good news: When I started my new therapist in May I had been regressing, not progressing. When she first measured me my right side was 11% larger than left. Friday it was down to 6%! She said that could even be a norm between dominant and nondominant sides. So all of the wrapping, MLD, etc has paid off. My truncal LE was almost under control until I had a mammo last week. It is still swelling some and some pain back but I am wearing the compression tank and kineseo tape faithfully. So now she says keep the sleeve on all day and jovipak all night and keep up the MLD & exercises. I now only have to see her once a week. I had to tell someone but no one else seems to understand how elating this is. They have to have been or be there. Oh and I am in a gauntlet instead of glove if I want. So Ducky keep up the wrapping, there is a light at the end of the tunnel!!!
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Becky, hoorah!
And smack in the middle of summer too -- that's great progress!Jo,
for crafters November is just around the corner - aaaugh! Still, I learned to do smocking while wrapped, so perhaps there's hope. The trick, if your fingers are wrapped, is to avoid stitching the gauze wraps to the project you're working on.
Things take a bit longer when you're wrapped, and you feel so clumsy. What helped me was to set up my workspace first so everything was very convenient, well lit, and as uncrowded as possible, put on some soothing music, and try to relax. It was incredibly satisfying to be making something tangible while wrapped instead of sitting around feeling claustrophobic. Also great for swelling reduction if you're using that arm as much as possible -- helps pump the stupid fluid out of there. Thinking of you!Be well,
Binney0 -
Becky, funny how our concept of victories change--this is great news, and you've turned things around, found a decent therapist and got control of the situation.
Huge hugs and cheers.
It's no small thing.
Kira
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BeckySharp - Hurrah for you! That's awesome! And we so get it!
Binney - What an inspiration you are on so many levels! I would so be one to sew something to my garments/wraps! If and when I ever learn to wrap ... you all will get really tired of hearing my laments, I"m sure!
Jo-5 - One of my favorite saying that I heard on another cancer board is this: We do what we have to do so we can do what we want to do. You can do this! xo
Thank you all for being here ... don't know what I'd do without you all! xo
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Totally impressive that you smock while wrapped!
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kitty dog: on HSN Rhonda Shear has something called the "ahhh bra""" it goes by your shirt size, not your boob size. i've worn it since i got the BMX, and swear by it. its' like the genie bra; but i like it even better.. look it up; no hurt to look....(((((yellow dog lady))))
Binney: i salute you, smocking while wrapped! my big thing now is, i can't figure out how to thread the machine, between the le in my hand, and neuropathy. im disgusted, doing what i can by hand (with a thimble, ladies..) and, doing sewing when my DH is home to bail me out, when i (inevitably) break the thread..GRRRR>............3jays
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Jo, your question about where to put the money for the sale of each breast cancer ornament. If you have a local center that deals with breast cancer patients, you could donate the money where it will help local people rather than look for a national program. We have a wig bank that works with all cancer patients from this county. We provide all cancer patients from the county with wigs, information, as well as support group meetings, and the coordinator helps get free mammograms for local women with no insurance.
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Sheila, I like the local idea. But, Jo, you could designate it to help pay for LE garments and/or treatment too, since it's bc-related and not otherwise provided for.
Then again, contributions to bc.org are always welcome, I'm sure!
That's incredibly generous of you!
Brava!
Binney0 -
Really not very chipper today .........................Forgot I changed my LE appt., from 3pm to 11:30, and just got a call that I missed it.................shit..................then found out I can't get another one until August 27th................that is the only one that fit in their schedule and mine .........shit again...................then I called the place that made my "sleeve", and also custom made it too long...........and the woman who measures is a BC patient herself, and she got an infection in her implant, is getting surgery, and won't be back till next week.......................and all the appts. she has won't work for me.........................shit again........................so they are calling me back later since they are going to try to work soemthing out.
well she is the only one who measures, so if she is the one who screwed it up (although my LE therapist said she is the best and thinks it was the manufacturer's fault)...........and they are going to try and let soemone else do the measuring.................what the hell are they going to do..................what a pain in the ass....................and its only Monday......................grrrrrrrrr.
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Sheesh Ducky--maybe you should just skip Mondays from now on and go straight into Tuesday. This LE journey has been very frustrating hasn't it? Hang in there. Becky
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Well got the call.........................nothing till next week, and none of the appt. work for me............not driving my 2 grandchildren all the way up I-95..............that road is horrible...........just to keep up with the flow you have to do 75/80 mph.............hate that road.....................will wait till my son can give me a ride..................God I hate cancer.
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Gosh Ducky---you sure got the shitty end of the stick lately.....Ive been thinkin of you a lot lately and prayin for you too.....Im glad you took that lill pill.Just wish you would have a couple of good days now....Chin up sista.It does get better.You know that....huggggggggggggs K0
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Ducky - you have had a run lately. I second Becky's idea for all of us - let's just skip Mondays and go right to Tuesdays. Heck, let's just skip the entire workweek and go right to Friday evening!
Tried something different this morning - I was so hot and sweaty after jogging this morning that I jumped into the pool. I still needed to do my daily Lebeds, so I decided to do them while standing shoulder-high water. I figured since water exercise seems to be good for LE, doing the Lebeds in water had to be doubly-good. I just do that first 15 minute part most mornings. When I came to that part near the end where you do arm circles like the backstroke then front circles like a free style stroke, I decided to do an actual backstroke and freestyle for four slow rotations. It actually felt very good. We'll see how it goes after a week or two of "Water Lebeds".
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Dang it Ducky. Hope Tuesday is better for you. I am having a crappy memory day. I forgot to pack my tribute. We will be at the beach for five days. uggggggggg. I still can't believe I forgot it but I asked my DD to make the bed..It was on the bed and yes she just pulled the sheets up over it so it never occurred to me I left them. Thankfully I remembered my pillows. lol We made it safely but I have some stingy in my LE arm. I think I just irritated some nerves when I tried to move a suitcase. I will say my energy is better than last year when we were here. I am still exhausted but I packed, cleaned up the house, drove 4 hours, unpacked, went grocery shopping and cleaned the condo. I should be tired right. lol Hope we all have great weeks with no swelling!!!1
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Does anyone know if baby powder is good for LE arm? I use it in hot weather to feel cooler and put some on today before I did MLD. It was the most pleasant MLD session I've had - usually MLD is ho-hum but this time it actually felt very nice. I don't want to sabotage myself though! Also, does anyone know if the powder will harm the garments? It was pretty much gone before I put on my sleeve but I'd like to make sure.
Thanks.
Leah
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Mary--Did you wear a compression garment in the pool? I go to a community center near me and walk on the track and get sweaty. I used to go to water aerobics there and have been thinking about getting back in the water.
KittyDog--Have a good time at the beach. You made me tired describing all of your cleaning!
Becky
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Becky - no compression garment in the pool for me. I have early stage LE and have learned I can maintain w/o compression garments for stuff like swimming and aerobics. (However, I am a fanatic about wearing it when flying or doing weights/resistance, yoga, or chores like raking, snow shoveling, gardening, painting, etc.) Sounds like the water aerobics might be a perfect part of your exercise program.
Gee, it's hard to think of snow shoveling when it's supposed to hit 100 degrees today for the umpteenth time this year.
Kitty - nice that you can tell the difference in your energy levels between last year and this year. I know I've felt sometimes like I'm still recovering from everything, then some annual event rolls around where I can compare, and I realize that things really do get better. Have a great trip!
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Hi ladies..............I have a pool at my home down the shore........I asked about wearing things on the LE arm while in the water, they said "NO", because the chlorine will destroy the garments......and the bandages.....which ever one your wearing...............I went in without............mine is mild, and had no problem, not sure for anyone with anything more then that................
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I've been taking a water aerobics class. I go in without my sleeve and have had NO problems. The arm feels good after the class (actually all of me feels good!).
Still would like to know if anyone knows anything about using baby powder....
Leah
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Daiva: I was just thinking about accupuncture to help me with LE. the acccupuncture never helped me through chemo so I am little reluctant to try on my own but I seen a study at Sloane Kettering involving accupuncture. I am going to see if I can get on it
Cookiegal: Did you see this in the clinical trial section on website?
yellowdog: that is such a sad sad story about your dad...Couldn't the officer see that he had a problem...
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duckyb: is your home down the shore in NJ? I am from NJ and most jerseyans use that catch phrase. I also have house "down the shore"...I am in LBI
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njbhwgirl.....................yes I'm in South Jersey.............................about 6 miles from Cape May, NJ..........in an area called Cape May Beach..................it is between North Cape May, and The Villas...............................We can drive to the beach, stay a while, then come back home when all the "nuts" arrive, and go in the pool for the rest of the day ......................quiet when I want it..................craziness when I need it.....................best of both worlds.....................2 of my sons have homes in North Wildwood, but that is too, too, crazy for me as a daily diet...................They have the craziness 24/7....................Wildwood is not what it was when I was young, or when my children were young.................So yes, I do say "down the shore"....................showing my age.76
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njb................back here at "home", I am right outside Philly.......................just moved from Springfield, pa............to Drexel Hill in December.................downsized............its just me.........all my children are married with children..........I have 6..54 to 42, and 18 grandchildren 28 to 10, and 2 twin great grandaughters almost 5 months old...............my husband passed away 20 years ago.......widowed since I was 56.............sometimes life gives you lemons.................I chose to make lemonade.............then cancer..........oh well, shit happens, right........................
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Leah,
I haven't used powder of any kind on my arms. I have dry skin, and I think that would just make mine worse. I have used J&J Baby Powder with cornstarch instead of talc on things like my PALs foobs and where I might be sweating. I haven't had a problem with it. I prefer cornstarch to talc. I wouldn't think it would be good for the garments, but maybe not bad. Others with some real experience???
Dawn
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re the talc or cornstarch ... I'm interested too. My hands get really sweaty and I'm trying to stay cool but when your hands are wet and your skin is sticky ... it's mighty hard to do the MLD. I may try the cornstarch unless someone wiser than I says it's not a good idea ...
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Hi ladies! I've been keeping up with your posts and wanted to check in myself.
I have to say that my arm is feeling pretty fantastic. I was so worried last night b/c it was hurting really bad. Just reallly really achy! I think it felt like that the last time before it swelled. I had gone to PT yesterday morning too so I'm not sure what was up. But I did MLD again really well and wrapped. When I took it off this evening it looked fabulous! And I've been going to zumba once a week, so I went tonight and it always feels great afterwards. Plus, yesterday at my PT appointment, she measured my arm and in the past 6 weeks my arm has had a 9% reduction, even while going through rads. So I'm hoping the last little bit will go away once I'm done with rads in 2 days!
It feels great knowing that this intensive therapy is showing some results. It took awhile but I'm happy to see progress and wanted to share it with all of you. Thanks for all of your support.
So I was at the cancer center and having labs done today when a nurse, yet again, told me that she had never seen anyone's arm wrapped like mine for LE. I told her, it was the standard treatment and that it really works. I said if you don't or haven't ever seen it, then people probably are not getting quality care. She said..yea, well maybe it's just treated differently at different places. She totally invalidated my therapy. Whatever!!!!!!!! I finally did see another woman on with a sleeve. However, she had nothing on her hand!!!!!!!!! Yikes! I could tell her arm was really swollen too. I think I'd like to hold an inservice there and talk to other cancer patients and even the staff about proper treatment for LE. I'm so tired of hearing that they've never seen a wrap before. I feel like that's why too many women give up on treatment. Because they have no support!
Ok, I'm done. I hope everyone has a lovely evening.
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