GRRRRRRRRR I HATE LE..........
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Thank you so much KittyDog!
Binney, I did snip the finger spacers of the Tribute a bit and it helped. But with the Tribute being SO pricey, I was conservative about how much I cut and every now and then my finger webbing gets cut, nonetheless. If I had to hazard a guess, it happens when the Tribute is loose (about to be laundered.) Some kind of padding would probably work, but adding more bulk might be problematic for getting under a garment.
A month or so ago, Kira urged people to email their comments/suggestions about the Tribute to Kathy Weatherly (CEO of Solaris). Has anyone heard back? Yesterday, I emailed her about the hand design of the Tribute asking her if they can sew each of the fingers of the Tribute separately. The Tribute thumb is sewn separately from the other fingers and it works terrifically. The 4 fingers are sewn as a mitt, and the Tribute does a lousy job on those fingers. I can't help but think if Solaris sewed ALL of the fingers separate from the others, it would do a better job compressing all 4 of my fingers.
In my email I also sent pics of what I made with Komprex and asked her if Solaris would consider making something like it. I'll let you know if I hear anything back from Solaris .... KS1
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We just got back from Borders - I was engrossed in the books, wearing my sleeve/gaunt, oblivious. When we got outside my husband and daughter told me that a boy about 8 was pointing at my arm and asking his mom about it. Apparently they thought it could be an artificial arm.
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I don't use anything to done my sleeve. My fingernails stay very short thanks to loosing all of them during chemo and now I can't stand them long thanks to the neuropathy. When I got my custom sleeve, they sold me Alps Prosethetic fitting Lotion with skin conditioner. It makes the skin very smooth and silk feeling. The sleeve goes on so much easier with it. The best part...I have not had any reaction to it. It was expensive. $18.00 for the 4oz. bottle.
Juzo has it on their site but here is a link with a little more information about it.0 -
Just to say that this is a fantastic thread. Somehow I've never read it until now, and after the first few pages am skipping to the end to say "Hell, yes, I hate LE too." I have a "Cancer Sucks" button from Breast Cancer Action. I'm going to do a LE Sucks version.
"It's pink October, and there was a photo of courageous women running to fight and celebrate their survivorship, and not ONE had any compression garments on." All too true.
The PT who I saw for left rotator cuff pain who knew I was 6 months out from a Mx and gave me pushups and other strengthening exercises to do without any compression garments. And I was too naive to know. A then a cancer center PT, LANA certified no less, who was teaching me stretches post-right-MX, who when I asked her "what's this thickening from just medically of my front-of-R-shoulder to above my Mx scar?" told me she didn't know. Later on, after I realized it was LE from reading all the info on this site and on StepUpSpeakOut, and pointed it out to the PT who then agreed with me.
The physician in the cancer rehab program, who reassured me I was at low risk for LE when I asked about how to increase exercise without exacerbating LE. Yet earlier during the exam he agreed I had some trunckal LE. And when I started to say something about real-life statistics being higher than expected for SNB pts getting LE, he cut me off and said he already knew the statistics.
I find the trunckal LE worse than no breast, because my skin is so tender and I have been dx'd with neuropathic pain in that area (by a non-believeing-in LE MD, no less). Shoulder/arm feels heavy and weird. Only two flares with swelling in wrist and fingers, (watchband not fitting) several weeks apart, one probably triggered by flying.
Oh, and then the LE garments fitter who "fit" and sold me a gauntlet which hurt my hand but she never offered to replace it. Who had never heard of the Belisse compression bra. Who didn't know about compression sleeves which came up over the shoulder a bit (to avoid cinching it at top of arm) like the Juzo Varin 3511 Arm Sleeve with Shoulder Strap http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/p1653/Juzo-Varin-3511-Arm-Sleeve-20-30mmHg-with-Shoulder-Strap/product_info.html which the cancer center PThad recommended.
I wish I could give all these sorts of people multi-limb LE and trunckal LE for a few days just so they'd have a clue.
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Lunakin, I LOVE your last line. I think that several times a day!!! Isn't it amazing how we practically have to take care of ourselves because of the ridiculous lack of knowledge about LE. I'm lucky to have found a good doctor and therapist but during my last visit to the doctor, her nurse measured me and then went to take my BP on my LE arm!!!!! No no, I exclaimed. You can't do that and proceeded to tell her the deal. She said she never heard of any of those things before. An LE doctor's nurse, for Pete's sake!!! I had the doc remeasure me and filled her ears.
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OMG...the fake arm story. Apparently somehow at the office people thought my arm was artificial as well...and could not believe how "real" it looked.
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cookiegal - Amazing how well the fingers move too, they are so life-like!!!
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DesignerMom, LE can cause pain. That was the main thing that made me think I had LE was the pain in my bicep & it felt heavy. My bc side arm (the one with the LE) is actually smaller than the non-bc arm now because I don't do a lot of heavy lifting with it anymore. BUT I did have LE because the LE therapist could feel the swollen lymph nodes. When I do my MLD exercises it looks even smaller. So LE does cause pain.
Omaz, one of my students at school asked if I had an artificial arm. Sure a real hand on an artificial arm ;P
kane744, when I was at my PCP a nurse came in to take my BP. I stuck out my leg like I always do. (I had a BMX) She got nasty & asked why she couldn't use the other arm. (Had my sleeve on the LE arm) I told her because I already have LE in that arm & I am at risk for the other arm. She stormed out & never did come back to take my BP. Guess she doesn't know how to take BP in a leg.
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mrsnjband- Thanks for the feedback that LE can cause pain. I am realizing that you ladies know more about LE than all of my doctors put together. So tell me why I am paying them? Maybe they should pay me to teach them!
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Amazing how little the professionals know about this. It is so disheartening! It is nice knowing you all are here. Thank you
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Norma June and DesignerMom. Thanks to the women here on this site I have learned how to take my bp on my leg with an automatic cuff. I now take my bp cuff with me to the doctor's office and have taught the nurses how to take my bp both with their manual cuff and my auto cuff.
I also have gotten some of the plastic pink alert bracelets that I keep in my car and I put them on before going into the doctor's office as a reminder that my arms are off limits (bilat mast). At my last doctor's appointment he asked if I wore those every time I go to a doctor's appointment, my response was yes. He was impressed that I was proactive in protecting my arms.
Sheila
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lvtwo!qit- Like I said, they should be paying you for training their nurses! Why are we the ones who are informing them about this? Shouldn't it be the other way around?
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Question- for those of you that are having your bp taken on the leg, is this because of bilateral lymphadema or bilateral mastectomies? I have lymphadema on one side which was my sentinel node side but have allowed bp, blood draws etc on the other arm even though I had three nodes removed, they were in the breast/chest area.
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They use my leg because I had bilateral mastectomies which put me at risk for LE, and I now have Stage 0 LE which I handle with gloves and sleeves when I need them, and daily MLD. If you had a bilat, you are at risk on both sides. Don't let anyone tell you you aren't.
Dawn
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I had bilat mast and from the start have had bp on leg, I have stage 0 LE in my left hand as Dawn said am handling with a gauntlet when I need it. I am protecting both arms by not allowing bp or needle sticks to prevent further LE damage.
Sheila
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I hate how much my hand and wrist swell and HURT after gardening. Sux! I love to garden... I love my flowers and herbs.... so I WILL NOT give it up. It does not matter what garments I wear during gardening either.... they do not work.
So... I garden... and then pay a little price.... it is what it is. It stinks.
I hope you all STOP SWELLING AND HURTING !
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
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Estepp - Grrr with you!! I know you probably already do this but my LE therapist told me not to do any one motion that much - do you take breaks while gardening? When I asked her about swimming, which it what I really enjoy, she said yes but I wasn't supposed to fatigue the arm and I wasn't supposed to do the same stroke for bunches of laps. Now I try to vary it more and spend some of the time just kicking. Good luck, sorry about your arm, LE SUCKS.0
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Thanks sweety! Yes.... I fatigue my arm ... a lot these days. I did follow all the PT rules for about 6-8 months... and my arm/hand is the same either way... so.... one day....I just said to myself......." screw it"....... and I do as I please. I KNOW this is not the best " LE choice" but... It is what it is.... I would NEVER tell anyone else to say screw it though..LOL
I will add.... that if my LE ever got past a 5... ( scale of 1-10)..... I would follow the rules 100% that my PT tells me. She knows I am dealing the way I know how... and she is ok with that. She tells me that same thing......if it gets worse ( I am a 4) then I better do what I am told. She loves me..
Since LE is NO LAUGHING matter....... I would never let it get out of control. I think we all just have our stopping point of what we can, and cannot deal with...... what we are willing to do.... or not...... also..... what we HAVE to do in order to keep our LE at bay. ( or for me... at least a 4)
xxxooo
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A study that confirms to others what we already know: The distress and emotional impact of lymphedema on our daily lives. I pray this study would help to open other's eyes.
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grrrr. I went to my daughter's school this morning for a fund run. It was very hot at 9am to the point they cut the allotted time they had to run down to 20 minutes and they wet them every time they came by. My arm is okay but my truncal is paying the price. Under the arm and on the back feels awful. Anything I can do for the back? I did put on the compression cami that I found at Catherines
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Kittydog - Do you have access to a cool pool to soak in - would that help?0
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No we haven't opened our pool yet but we will be doing it this weekend. I did take a cool bath just because I thought I needed a nice long soak.
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I have a silly question. I bought my first sleeve and gauntlet last week in preparation for flying. I want to practice wearing it before the flight. The first time I put it on, with the help of the fitter, was a true struggle, and she was using those rubber gripper gloves. I was wondering about trying those hardware store cheap cotton gloves with the rubber-lined fingers (like workmen wear). Would those work? Or do I have to go find special rubber gloves? I thought these cotton ones might not be as hot and sticky.
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DM - what brand of sleeve did you get? What is your compression? I have mild LE and have a juzo sleeve at 20-30mg and I can get it on without too much struggle (of course I did punch myself in the face Sunday....). I am wondering if you have a heavier compression, is that so?0
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Funny Dawne-Hope, but I look at that link, and I see a way of distancing our feelings and experiences from those numbers, and can't help but think the next step is to relate it to "anxiety" and "perceived experience" and trivialize what we are going through. An amazing amount of survivorship literature right now has the key words "perceived" "anxiety" "overestimate" in it.
Now this has me rolling my eyes
http://abstract.asco.org/ConfCatView_102.html
a large number of these abstracts discuss the lack of correlation between BMI or weight gain after BC and survival. Really? because they sure have been harping about it this past couple of years. Hmmmm..... one discusses the biggest weight gain being in pre-menopausal women that go on Tamoxifen. Really? because, I know I've been quoted many times that the "STUDIES" show no difference in weight gain on Tamoxifen compared to placebo.
Personally, sick to death of the patient blaming going on in Breast Cancer right now
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did she teach you to fold it in half and then put your arm in it and pull it to the elbow and then the folded down part you struggle to pull to the top? I have the 30-40 and in the horrible material. I prefer the Juzo right off the counter but my arm isn't shaped that way.
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Designermom, I use the disposable latex gloves to put on the sleeve. I fold it in half, put it on up to a little below my elbow, then pull it on the rest of the way. I use the glove to get traction to smooth it into place.
Leah
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Omaz and Kitty- I have the Juzo soft 20-30. Maybe I am just anticipating problems I won't really have. I did sock myself in the face when I was putting it on with the fitter. Yes, she did teach me how to fold it in half to begin. I wore it around the store for about 15 minutes and it sure felt tight. I know it is supposed to be snug. She asked me if I felt any numbness or tingling and I didn't. I sure hope I can get comfortable wearing it. Do arms swell up more on airplanes? Will it get tighter? How do we know if it is too tight? Here I go, worrying ahead of time!! I guess anything that is new is worrisome.
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DM - At first mine felt tight too but you will be surprised and sometimes you just forget about it.0
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I have truncal LE and will be flying to Cayman Islands from DFW in August (thanks, Dad) - I am wondering what precautions I should take - sleeves, long sleeved compression garment, gloves, wrapping? I don't have any arm LE or hand LE, although after overworking my right hand recently I did have some swelling, but I may have had it even before my BMX - just edema? It went down pretty fast, and there was no redness or anything. So, any suggestions? I wouldn't know how to wrap my arm/hand, but I have time to find out if I start now. I have sleeves, but no gloves, yet.0
