GRRRRRRRRR I HATE LE..........
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And brownies under the bed when nothing else works!
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Kate, I want to add another statement on your tag line to put it on my tee-shirt. they tried to kill me three times! I had two dx of pre-cancer 18 months apart (Feb 2005-Sept 2006) before my dx of DCIS (April 2007).
I'm with Binney, Chocolate is good for anything that ails you. How about Brazil nuts dipped in Chocolate? they must be twice as good for you.
Sheila
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@Binney Yeah I just do three or four a day. The latest studies seem to suggest that nut eaters lose weight. Go figure. And one square of the 86% dark chocolate.
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OK I have a challenging day tomorrow, with several public events, one outside, and some difficult decisions about wearing compression.
One event revolves around disabilities so I feel like a HEEL for being ashamed of the glove, but in a setting with a lot of people the questions can be overwhelming.
Just wish me cool weather
Oh and there is running involved. I like running but running in public is another social phobia, my "honky tonk bedonky donk" bounces!
I was giving an instructional talk to a group of girl scouts with my glove on and the parents started filming me with their Iphones and I had an anxiety attack.
I stopped and took off my sleeve and glove which I realize drew a whole lot MORE attention. But I just have a HORROR of being filmed or photographed with my glove on.
Cookie Power!
Happy weekend!
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hi gals... i'm bbbaaackk.. still tyoing one handed, but with even more empathy with you, Kira, for your broken arm..
this mohs surgery hurt worse than any of the others i've had.. they said it could be the le now sends more pain to the receptors... huh!( at least they recognized the le) and, they said no glove while im healing, so i now have a "minnie mouse" hand!!!
its' given me the permission to slow down, which i apparently needed..(ya think?) after all the craziness here.. im also a "less is more" gal. i learned it from Binney, and brought it up to my le therapist. the next glove, sleeves we lessened the compression and it worked ( so far, anyway)
wishing you all a (no) swell weekend!3jays
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3jays, maybe ask your doctor if you can wrap your hand gently? The thing is, everything will heal better (and with much less infection risk) if you're not swollen, so see what he says to a gentle wrap. Goodness!
Let's hear it for slowing down!
Sometimes we just need a push to do it.Get better quick!
Binney0 -
Wait, chocolate is good for LE?!? YIPPEE!!! Finally some good news! Now is it too early to have one of those Snicker bars I hid from the kids?
Sheila- They told me mine was pre-cancer, too. Then they said it was just one spot of DCIS. Then they said there were multiple spots of DCIS. Amazing how little they still know about BC.
3jays- So glad you're surgery is over and done! (Now you better come over to the GSAD thread and update or they're going to start going crazy!) Sorry you're having more pain this time and the hand swelling. Hope it's better soon! (((hugs)))
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So I got one of my sleeves/gauntlets today (the other had to be ordered) and have some concerns. I don't think it is fitted right according to SUSO. With just the sleeve on, my hand started going numb like all the blood was going out of it. And at the top of the sleeve it looked like it was bulging like the photo. After an hour my arm was hurting so bad I took off the sleeve and I had marks at my wrist and the top of my arm. Also, the gauntlet seems a little loose at the wrist. Does it take a few tries before they get you fitted just right (as in trial and error?).
The good news is at my appointment today my LE PT measured me and my swelling has gone down everywhere! She's going to email me the exact measurements but she seemed very pleased. Woo hoo!
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I had my first visit with the LE PT. She wants to fit me for a sleeve. I'm not really having a problem with LE, but of course I don't want a problem either. This whole sleeve and glove thing sounds like it hurts more than it helps. Does anyone feel that it helps?
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The order came in !! I just picked up my sleeves & gloves yesterday. They seem to fit & I'll wear them to fly Sunday. Also picked up my Belisse bra for truncal & breast LE. More like an old fashioned corset, but no whalebone. It seems to be pretty comfortable as long as I'm in the air conditioning. I dread what it will feel like in our Houston summers. We're already at 92/93/94 degrees. The tech did say to keep the garments on for several hours after the plane lands to let the pressure equalize. Does anyone else do that?
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just cking in.. thanks, Kate, i DID go to the thread tonight.. not getting as much computer time these days...yet...
i wanted to say, YES!!! to dune sleeper. i had to try a few, but when you get the right ones.. AHHHH..
everything is still way too hot for fla summers, so its out at night. the pool is for the days.lol
i really have to have a good reason to go out in the day for much time..
off to the onco next week, she's angry i missed 3 appts. she'll freak out when she sees me, though, im weak, and she's not used to seeing me like this.. she's a wonderful gal!!!i really feel lucky that she has her office call me. so many out there don't even give a r..ts aZZZ......3jays
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Kate, did your therapist check them? My sleeves and gloves come in the mail and I usually will try on but not wear until therapist confirms correct fit. You can tell her how it felt when you tried on and wore for a while. Doesn't sound like a good fit by the way you describe. SUSO's pictures of correct/poor fit are right on the money, so since they don't look right and don't feel right - numb or tight enough to cause pain is bad - I would wait and talk with therapist. Did you get custom or off-shelf set? Once I had developed swelling in hand/arm, I had to move to custom because the off-shelf no longer fit right and was too tight and binding in places. I had to switch to the Elvarex flat weave vs the spiral weave.
When I first wore sleeve and glove for flying and exercise, they were off-shelf, and without LE in arm/hand, they fit fine. It did take wearing a couple of times for an hour just to get used to the sensation of compression. I did that before I used for flying, which required wearing for longer period. For flying, my therapist had me wear at least an hour before takeoff and keep on at least an hour after landing. I didn't want to risk having to remove sleeve and glove when going through security, so I arrived at airport early enough that I had an hour free after security and would don sleeve and glove in ladies room.
I haven't flown since arm and hand became involved in Feb/Mar, so that will be a whole new ball game. Taking the train next week in order to avoid flying. Going to FL where hot weather always is issue for my swelling. Arm and hand are just back down to normal size and I am not ready to do a double whammy on it with flying and hot weather. Yes, I am paranoid to fly again!
I really lucked out with fit of custom sleeve, glove, and Solaris night vest. Therapist has warned me that second set may not fit exactly the same even though they are using same measurements. I am prepared to be jinxed on fit with second set. I hope they arrive before I leave next Thurs, as they are beige vs the black I already have. Cannot imagine walking around with thick black sleeve and glove in almost 90 degree weather. The sun beating down on me makes me crazy with the truncal LE. Ugh, the more I think about this, the less I want to go.
I found that the first off-shelf sleeve and glove I got fit well enough, but the second and third sets were not as good. I got the second and third sets at the same time, so I was comparing both out of box. Original set was only used a handful of times by the time I got next sets. I didn't fly much, but therapist said it was good to have extra sets, especially since insurance covered. One sleeve and glove were almost as good, but another sleeve was really bad and I couldn't wear or it trapped fluid in crook of my elbow. With one of the gloves the fingers were ridiculously shorter, but it worked if I needed a third glove while washing others. Quality control for the Medi Mediven glove stinks, therapist said they can really vary. The off-shelf Jobst sleeves were a little better as far as consistency, except for that one. Okay, one out of three sleeves being bad isn't very consistent either. It's no wonder people have fit issues.0 -
Tina- My therapist hasn't seen them yet. I picked them up right after my session with her. I see her again on Monday, though, so I'll have her check them. I talked to the fitter today and I have a feeling she gave me some with more compression than I need. I should have made a copy of the order to confirm. I swear they're too long, too. Meanwhile, I'm not wearing them as I'm afraid it will do more harm than good. So will just do MLD and try and stay out of the heat until Monday. Oh, btw, they were off the shelf not custom.
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I have become paranoid of flying, though I flew a few times in the 10 months following surgery. In some ways this is the worst consequence and biggest scar of cancer. It's really a painful subject for me.
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Going to BS today and getting six-mo mammo. OT is concerned about having mammo aggregate my Truncal/breast LE and wondered about having dr order an MRI as a "medical necessity." anyone else done this? Unfortunately I see BS after the mammo, so not much chance this time. She also recommended a thermogram. Anyone tried this? Insurance doesn't cover so would be my cost but is low risk and no radiation.
This will be first visit to BS since LE diagnosis in Nov. he told me I wouldn't get it since I only had 3 nodes removed. HA! not only LE but two cords and an inflamed node or scar tissue under SNB scar. Am taking printout from step up website about what dr's should know. Well see how receptive he is to that!!!0 -
I hear you, Cookie. The ability to feel free to travel is a major loss. Usually I think about it as it relates to vacation and how it has limited where and when I will go. However, right now my mother has taken a change for the worse, and it is upsetting and frustrating that I have had to wait to visit her. I don't like making the choice between being there for her and taking care of myself, but I have had to make myself the priority. She is being taken care of well in the nursing facility, so I don't have to worry that way. Thank goodness my husband visited her for me a few weeks ago. Today I talked with her doctor and they will be doing a swallowing study, as she has begun aspirating food into her lungs each meal and will become at risk for pneumonia. I will have to decide whether she will be given a feeding tube, and he signed papers today saying she no longer can make decisions for herself. Oh . . . Such sadness. I will be leaving next Thurs and arriving Fri and will finally see her. Decisions can wait until then. The doctor said any choice re feeding tube won't be wrong. All of her functions seem to be slowly failing. I am dreading the trip on many levels. All I can do is put one foot in front of the other.
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i dn't understand why "off the shelf" doesn't fit well.. are you guys ordering them on line??
we have a drug store here, that sells them, and i just try them, till i get one that fits right.. i prefer the off the shelf by jbst even better then the custom my ins pays for.. gloves aren't off the shelf yet, and they're the most imp for me.. @Kate: you may be a less is more gal.. i go 15-20 they work better for me...3jays.
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I just looked at the box my sleeves came in and I think this is what it says. (It's hard because most of it looks like it's in German or something.)
Mediven 95 Armsleeve with top band- Long (44-50 cm) (Not sure why she would give me long as I'm quite short and don't have extremely long arms. These feel like they're coming up too high into my armpits.)
CG II 25-32
I could have sworn my LE PT said she was recommending a Class I sleeve but maybe that was the first PT I saw. I tried to get ahold of my PT to confirm but she is out of town for the weekend. I'm assuming the higher the number the tighter the compression?
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3jays, you must have the perfectly shaped arm! I am so glad your sleeves fit you well. I think it partly depends where the swelling is in your arm or hand that makes a difference.
Kate, the European class system is slightly different than US one. The US class 0 overlaps with European class l, and the same is true for US class l and European class ll. They aren't an exact overlap, but pretty close. The amount of mercury determines the compression level. See the SUSO site's section on proper fitting of sleeves and gloves. There is a sub-section that talks about compression levels and they show US and European classes:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm#Off-the-shelf_and_custom_made0 -
i don't know about "perfect arms" not anymore, for sure 20 yrs ago..hahaha
i have insisted on getting "long" on my gloves, cause i don't wear my sleeves, like I should.. but long, on the sleeves wouldn't be good. i have short little arms. i DO drag the sleeves WAY up, to over/ or nearly over the shoulder, if im not being active. just don't do it high in the armpit, where i have a problem..3jays
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Why do they measure these garments in mercury? Anyone know?
Charlene
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Charlene, millimeters of mercury (mm Hg) is a measure of pressure. It's what's used to measure blood pressure, for instance, or atmospheric pressure. It has to do with how much pressure it takes to move an inch of mercury in a glass tube (that's simplified, but you get the idea). Remember when the blood pressure devise on the doctor's wall had an actual glass tube of mercury in it? Mercury is heavier than water so it takes less of it to measure pressure, and it doesn't evaporate -- so it was adopted as a standard for measuring pressure. (Nowdays they use other gauges in the doctor's office that don't contain mercury, because spilled mercury is a health hazard, but those gauges are measured against mercury when they're manufactured). Our garments are labeled with the pressure range, for instance "20-30 mmHg," which indicates that it is graduated pressure (less at the axilla, more at the wrist) that goes from 20 to 30 mmHg.
Hope that helps. We should all get honorary degrees in science just for having LE!
Be well,
Binney0 -
Thank you, Binney, for explaining that!!
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Yes, thank you Binney!!!!
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thanks for the suggestion of wrapping, gals.. surgeon said no as long as it was painful.. so, today, i started using my old glove, and it really does help. since they use them for post surgery, i thought it'd be fine. i can't leave em on forever, but when i put a sleeve on, my hands swell, and i NEEDED to do the sleeve.. its much better, all around today.
went to my onco today.. finally.. i've cancelled 3 times!!!
they wanted bloos work, and where getting worried, i'd cancelled..
it took le to get me there, really... im glad i went.. seems there's a new fitter that's part of the hospital where my le therapist is.. so, im gonna check her out next.. and onco wrote for 2 more gloves.. (and sleeves) gonna change to jobst, this time.. i don't like the feel of the gottfreid, but it does the job. so when im in a flare, i use them exclusively!!!
onward and upward.. i've slowed down more than i'd choose, with the hypthyroid, but, im not flaring like i was, so, its' a good trade off, i guess. got in the garden to plant my mothers day flowers, and watering everyday.. if the weather will take a break from rain this weekend, its back to the pool for me....
good to see everyone here....3jays
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I posted this on exercise, and realized it's more grrrrr
I fell off the exercise wagon, although I have been gardening.
With the whole upheaval in my professional/personal life, my MLD slacked, and I noticed the difference, so it's back on the schedule.
I did this frantic, I'll interview for ANY job routine, and yesterday a very promising situation presented itself, so I'm going to cancel all the ridiculous interviews I had set up and actually chill for a while.
Traveling to Vermont to speak at the Vodder recertification this weekend: It's called "Dilemmas in Diagnosis: Denying our Reality"
Now, to get back to exercising. It's getting warm, but we put in central A/C last week. And after 4 years on tamoxifen, I'm doing the nighttime hot flashes like there's no tomorrow.
And, my mother's feet and leg swelled, and I had my father put on compression stockings, which worked wonders--she was getting a bed sore from laying in bed with her leg up on pillows and ice, and then my sister found they were folding them over just below the knee....My father is complaining about how difficult they are, and I had them get the one's that are more like sports socks. And they get some PT and home care services. And no one addressed the swelling, except to immobilize her.
Should this be in the grrrrr thread?
Kira0 -
Kira, you do have a lot of grrr going on there! Your mother and family are fortunate to have your swell expertise at hand. Good luck with the Vodder presentation. I'm sure it will be very well received. And...sending you some moral support for the interview and for finding time to get back on the LE care wagon!
Carol0 -
Carol, I'm such a creature of routine--I did my MLD after my shower in the morning, before work--now with work not regular, it all fell apart.
I did notice a difference, especially after gardening in the heat, so MLD is back on the schedule.
I just cancelled two interviews, and am going to ride out the process of checking out the job that actually interests me. And study for the Klose class, and tweak my slides.
And try and get back on the exercise/MLD routine.
My wonderful, wonderful--but tragically, former now-- nurse had written yesterday's interview on her schedule and checked in with me--it's literally across the street from the old office, and I didn't feel the need to put a bag over my head or duck when I drove in for the interview...
Last class for the semester today. I'll miss my students, they turned into a great group.
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Kira, When I was out of work, I too fell out of my routine, I don't have to do the mld, but I was not wearing my gauntlet every day and I was not drinking the water like I did when I was working and I could tell it in my hand. Now I am back at work I am wearing my gauntlet daily and drinking the water again. Also when I was laid off in 2010 my husband said to only interview for jobs that I really wanted, not to mess with the jobs that I was not really interested in, it took 18 months but my dream job landed in my lap April 2 and I even got a promotion that went in effect on May 1.
Sheila
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Hey everyone- I finally saw my LE PT today and she thinks my sleeves are way too tight so guess it was good I didn't wear them! She's going to call the fitter tomorrow and talk to her about it (they work at the same hospital) and they'll swap me out to something else. I'm relieved. I was afraid she was going to say, "Nope, that's how they're supposed to fit." 0
