GRRRRRRRRR I HATE LE..........
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Marple - I wear a sleeve and glove during the day, but nothing at night. And I start the night with my arm elevated, and then roll on my side during the night. When I was recovering from DIEP I had a wedge under my legs and would stay still, I think I'll start doing that again. Frustrating is an understatement.
Jeannie - Would you like to be Thelma, or Louise?
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Janet, if you got a night garment you could flop around any old way you wanted at night and still wake up with your arm in good control. They're expensive but they last about two years or more, so that's 1,000 good night's sleep
.Enjoy your jammin' 'jama day
. (Chocolate cake is best for pity parties, with a side of double chocolate ice cream
.)Big hugs,
Binney0 -
Oh Binney, how I wish ADP (Assisted Devices Program (in Ontario)) would cover the partial cost of my ReidSleeve every two years. But nope, it's partially covered every five years!!!!! WTH? Don't get me wrong, I'm grateful for partial coverage but I can't imagine wearing anything for 5 years. (Edit to add, 'other than jewelry.)
Janet, if you had a night sleeve you might even not flop around. I have two positions for sleeping, on my back and on my non affected side. Thankfully I have a non affected side. A little off topic but I was having an awful time with my ear on affected side. Always felt plugged like water was in it. I finally got the bright idea a while back to lie on that ear (not really the whole side of me, just my head). Lo and behold, my ear cleared. I guess after 7 years of not lying on that side my ear needed the pull of gravity or whatever it was that happened. No more water in the ear sounds.
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Janet, I feel what you feel. Some days it seems that my arm runs my life. It is my dominant arm and I have to stop and think.....do I use this arm? should I lift this? which sleeve do I put on first?....many things I have been doing automatically for almost 64 years, I now have to stop and think about first. My arm is not as strong as it once was (because I baby it) and some simple tasks are just so frustrating.
I sleep in a sleeve with some foam ribbing my therapist gave me under it. I have not figured out how to keep my arm elevated after I fall asleep.....does someone know a trick? I do not sleep well most nights and turn a lot. Getting back to sleep is my main goal and where my arm is second to that.
As my friend said "this thing just does not seem to end but presents challenge after challenge"....I believe she really understands.
I did get a call from the Flexitouch people that my insurance had approved the pump (damn decent of them) and it has been shipped.....may be here Monday. I hope it helps
I was reminded of the call I got from my case manager from my insurance right before my mastectomy....she called to offer her services and I thought how nice until she said " I was the one who approved your surgery". I wanted to say"I have f---ing breast cancer and YOU had to APPROVE it's removal."...but I did not. It did make me think how carefully I must always speak to patients and families.
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I need some help. I am having hand surgery in 2 weeks for two trigger fingers. I may even get the third done at the same time. My doctor said they will have to put a tourniquet on my forearm to cut off the blood supply while I am under twilight sedation.
What about my LE? I have mild LE in my left trunk and breast and so far only my trigger fingers have been an issue. No arm or hand LE. What do I do? How do I deal with this? I haven't even have a blood pressure cuff put on that arm let alone a tourniquet. Thanks in advance.
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As far as I know I did not have that when I had my surgery. If I did it didn't bother my arm. I had the middle and thumb done on my right hand. I did have some swelling for a few weeks but once he let me back in my sleeve if improved. Everynow and then I still get some swelling in my hand but not that anybody else would notice unless I pointed it out. I was put to sleep for mine due to all the nerve damage. Kee[ it elevated and watch your sodium.
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Thanks KittyDog. I did some research and found that as long as they don't keep the tourniquet on for too long it should be okay. I am still very nervous about the whole thing. My LE has been under control for awhile and I only use the sleeve for air travel, but having to be cautious is just another BC reminder.
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Ive got lymphedema in my right arm.Had breast surgery on May 14,and also had pt.It helped some,but then i had to go on chemo,and now im on tax for 12 weeks ,and the radiation,when i finish with this chemo...I wear my compression sleeve most of the day.It really helps .What i need to know is where do i look for the night garment,that you were talking about.??? I lay with my arms elavated on each side with 2 pillows..that helps me,but i sure would like a night garment .
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Kaye, google Solaris and Jovipak and you'll see some night garments. The one I use is a Solaris Tribute. Your therapist should be able to fit you for one or send you somewhere to be fitted. They are custom made and a bit spendy. Mine was covered by my insurance, subject to deductible and copay, of course. Medicare does not cover, and some in the forum have had to argue pretty hard to get insurance coverage. But it's worth investigating. Feels great, like a nice, reassuring hug to the arm. I go to bed achy and wake up feeling great, at least until well into the day when fluid starts to build again.
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Mods I need an ANGRY emoticon this am. Real baaaad. I sure could use it well. They say a picture tells a thousand words but there aint enough to describe this STUPID LE. Grrr.
LE if I could speak to you GET THIS. You stupid stupid STUPID lousy rotten miserable wretched idiotic SCUMBAG @*$&%^#*#($%*%&#(%$7#76@*$&^% !!!!! GRRRRRRRRR ...... I HATE MY BANDAGES THIS AM. GRRRRRRR you idiotic bandages. When WILL I GET THIS RIGHT. Youre nothing but a DIRTBAG LE... YOURE such an idiot friggin disease PERIOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
I'm soooooofreakin wild with this DIRTBAG DISEASE that keeps giving me the short straw. Grrrrrr I'm utterly and profoundly S.I.C.K. O.F .Y.O.U!!!! Everything you cost. All the time I spend. Just when I think Ive got ahead you dish me a backhander AGAIN. You miserable stinkin stealer. I sware I could swear but youre NOT going to take my last bastion of what I hold decent.
Reckon I know why this STUPID dealbreaker bandage thing is being so idiotic. My wrists are small and my arm tops DONT EXACTLY MATCH. Grrrrr . :-X stupid bandages wrinkle. Even after I wash them and lay out flat. UUUUGGGHHH IDIOTS. RANT RANT RANT!!!!
Over and out.
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Hear! Hear!
I'm right there with you, Musical. Hang tough! We're going to get on top of all this rot, just you wait and see.
And in the meantime, we're sure here for you--tell us how we can help.
Gentle hugs,
Binney0 -
Musical, I think considering what a pain in the ass this whole problem is....you were calm and controlled. I think you could have been much more grumpy and aggressive.
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Thankyou Binney
I wouldn't mind one of your choccies right now.... TNNurse that was the worst outburst I've ever done! Dunno how it could get much worse unless I swear which I aint. 
OK so I havent wrapped for a bit. I wanna DO THIS but something in me has to climb over this brick wall EVERY DANG TIME. That brick wall me thinks is my arm shape and it aint conducive to a tidy job. :-X. So...Arm is being a DICK so OK I better wrap. This a.m. I went out and thinking all was well...and hubby helped me as he always does, by holding things down or passing the bandage under my arm, especially above the elbow. When I got home I see the lower arm bandaging has totally moved right down to my wrist gaping bagging and hanging loose.... AWWWW grrrrr. So I get the lot off and havbe to do it on my own. Hubby at work. So if I do it myself the bandages wrinkle when I bend my arm. Grrrrrrrrrrrr. THAT makes me ropable...soooorry.Thx for letting me vent. You fortunate ladies who have little variation/slender arms... count your blessings!
I'll get better but right now bandages are still DIRTBAGS.
Now Im going to remember how my LEist can make a supherb job on this STUPID arm of mine....so it is actually possible.
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Musical - I'm so sorry you are having a GRRRR time of it.. I felt that way in the beginning.. But I'm one of the "mild" cases and my LE therapist said since mine is in the trunk - he wouldn't show me how to wrap the arms until it was necessary - he thought I had enough other "trauma" to deal with.. Just started to think about that - from what you and many others have said - it sound like "trauma" to wrap!
I got fed up with the sleeves lately because I started getting alot of ingrown hairs on the arms from being compliant...wearing the sleeves for work and all. Well after a few days off... thought I was doing ok, but arm was aching a bit... so went to put on the sleeves - and BULGE - took a while to get the sleeves on.. My hands aren't cold or turning blue, but obviously, I'm swollen in the upper arms again... Was I being silly taking that break??? I guess sometimes you have to take the break just to show what a "trauma" LE really is...
I'm thinking, I might have to go custom... Can't afford custom.... Guess I can try wearing my jovipak sleeves tonight.. might be time to try wearing them again.. I've just been wearing compression shirts at night... Kinda wish I got the tribute for nightgarment.. looks a little more comfortable than the jovipak.. Didn't get it because it was a few $100s more than the one I received.. It might have been worth the price..
You think this new Obama plan will let me get one???
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Gma, how crummy that we never get a break from LE without paying the consequences!
Hoping everything's soon back in control.As for the new healthcare plan paying for garments: they will have to take us on regardless of our medical conditions, but since Medicare doesn't pay for garments I expect the new plan won't either. Still, if other medical needs are covered it might free us up to save up a few bucks toward paying for them ourselves. <sigh!>
Gentle hugs,
Binney0 -
Was just thinking about something - I let them take a BP on my lower arm yesterday - that could have done something to the swell too???
Another question - if I have to take BPs myself at home - they told me to get this new wrist cuff - What do you think??:
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ok, its a grrrr bad day, I admit. So ts chocolate for all. Anything with choclate. I am inventing the chocolate flavoured sleeve right now so we can eat it right off our arms and then be really comfortable.
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Thanks, Hugz! Love the chocolate sleeve--licking it off even as I type....
Grrrrrrr is right!
Binney0 -
Binney, Oh your so funny.I bet you ordered Juzos mocha colored sleeve too.
Musical. I have a idea. The way you smack Le around is by participating in the KICK BUTT thread.
Thats where I kick LE really hard in the butt. Yah... I hate it too with a passion and this summer has been the hottest on the west coast ever. I just wanted to rip off my hot sleeve and strangle all the doctors that said I would never get LE. But I didn't. Instead I controlled my anger and KICKED LE's BUTT into a managable corner . Not as much as I should have but still I kicked LE pretty good. Enough to say OUCH!
I walked today and I kicked LE really good for you. Now LE is behaving like it should. Hope you feel better. grrrr dang LE.0 -
Actually, Hugz, I DO have the Juzo sleeves in mocha. How'd you know?!0 -
Musical, you go!!! Woooo-hoooo, that was a fun rant to read.
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Thx ladies for putting up with my rant.
OK Binney what I'd like to know is some practical tips on how to self bandage. Yep any ideas welcome no matter how stupid it might seem, or how trivial. All my ideas seem to go into poetry and I have none left over for wrapping. (duh)
Are we allowed to iron our bandages. Those damned wrinkles push all the wrong buttons in me.
Gma, lets hope you remain in the mild category. Unfortunately LE doesn't give us a nice deal, where we can forget about it. grr. <- OK I'm trying to tone down my grr's. Im pretty sure BPs anywhere on your arm isn't a good thing. I have mine on my thigh or calf since my "good" arm spat the dummy on BPs.
Hugz, sorry...
I can't smack LE around like you girls do in your kick butt thread. Ever heard of PN? (Peripheral Neuropathy) That proposition all on its own is worse than Cancer, Worse then LE, worse and more disruptive than anything I know and Oh lets not forget to add Arimidex wrecking havoc on your joints and bones which exacerbates PN issues, so PN IS THE PITTS. Theres a thread about it in the Chemo forums. However, I do my best. I do about 2 miles walk most days when my feet are at their best and in fact I believe it's helped counteract the arimidex aches, plus upped my good Cholestrol. In the summer its much much worse. I must walk when its cold. Forget treks and midday shopping or standing a long time. You can see some of us cant kick butt like others.Thx nibbana
I guess Im feeling extra sorry for myself with all sorts of thingd piling in on me, like my dear old Mum is in dementia care and all the issues and horrible stuff that goes with that and it just totally sucks. I feel guilty that I cant do more because of my STUPID feet. Theres so many things we can have on our plate and BC is only one of them.
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Musical.ohhhhh not PN that is the PITTS and GRRRS.
You poor dear and you are trying so hard even trying to walk. Well this means that you need some special care so here goes. Everyone knows here that I only give out kisses when people are having a rough time. I save them for times like this. Here is a couple.. There now you know that people here care and understand. That is why it is good to vent here because we are all in the same boat pretty much and can empathize. I remember the not so good ole days when Taxotere killed the nerves in my feet for a while. They did come back but I still have buzzy feet and am not sure if it is from the years ago taxotere chemo or maybe early diabetes warning. Either way it stinks.
Glad the walking is taking the cholestral down. That is good news for sure. I am going to kick butt more just for you!
I also had a dad with dementia and know the ups and downs with that. We only can do so much and you know what. Your mum still loves you even if you only can smile and make small talk with him. You are doing the best you can. Take care
I am sure the le smart girls will be able to help you with the stupid wraps. I try and reroll mine right after I take them off and this helps a bit but eventually I need to get new ones. Carol and I are saving our old bandages to wrap up all the docs in LE denial and then we are going to mount the docs on top of the Seattle space needle. Hope you can help us with some of your old bandages!
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Haha! I'm from Seattle and loved the visual! I have a few medical professionals to add to that pile......after DIEP when I was about to be discharged, several nurses came up to me to ask me about my sleeves and LE! At least they asked, I guess. But so many docs have said, just get your blood test in your arm! I have LE in both so it's horrible trying to find a vessel to poke in my feet or neck. It's been almost two years since bc dx and I am still working my way through recon. People keep saying, when will you be done? I will never be done. I will always have these sleeves to remind me and bug me.
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My doctor had the most hearty laugh then chuckled as he said."you'l l never get Lymphedema" He was almost doubled over in laughter. Stupid, stupid doc.
He couldn't claim ignorance because he knew what LE was other wise he would have never said that I wouldn't contract it................ Add him to the seattle space needle all by himself. But first let me wrap him in my old smelly dirty bangages! Oh and I want him to wear my old danky gardening LE gear. It almost reeks like hockey gear sweat! Oh and what about that LE glove I wrecked chopping onions in it. It smells like BO now. He can wear that too just as a reminder that he is wearing garments. grrrrrrrr0 -
Musical, I'll start off with some wrapping strategies that work for me and hopefully others will join in too. This is a tough skill to learn, but it yields to practice, so don't give up!
When I wash bandages (in a lingerie bag, water temperature set at warm or cool, gentle soap like Dreft or Ivory Snow), I take them out of the washer and carefully roll them up immediately, leave them that way for 15 minutes or so, then unroll them over the shower bar so they can hang down straight to dry. Roll them carefully when they're dry. Some of us use a bandage roller, but if you don't have one use a table or other flat surface to roll it slowly, keeping it flat and straight. Don't pull it as you roll, just roll it snugly but with the stretch relaxed.
If you're using finger wrap gauze and want to re-use it, wash it as above, then smooth it out with your fingers over a drying rack or the back of a chair. You can press the gauze with a coolish iron, but don't iron the bandages.
Getting ready to wrap, first choose a quiet place where you won't be interrupted. Some of us arrange all the supplies on our bed and kneel beside it, others sit at a table, but I personally prefer to sit in the middle of my bed so when I drop a bandage it doesn't roll all over the floor gathering dog hair.
Cut a few lengths of tape and stick them by one end to the edge of a table or dresser near you so you can reach them easily with your working hand. Lay out all the rest of your supplies in the order you'll need them, so you don't have to fuss around grabbing the wrong thing and getting it all out of order. Keep the instructions handy so you can refer to them as needed.
Quiet music's nice, if that helps relax you. Whatever works to give you a calm shot at this.
Take each step slowly. There's a two-fold process to keep in mind. First, the gradient compression: make sure you're not wrapping too tightly in frustration, or too loosely as you reach the top of your arm. The gradient thing is subtle, not huge--it should still pretty much conform to the contours of your hand and arm. The second is (unfortunately) neatness. Each rotation of the bandage around your arm should overlap the last one by half its width. That is not just so it looks pretty (though it IS sorta satisfying!), but so that there's enough coverage in each wrap-around to keep it from separating as you use your arm. (Some therapists teach you to tug gently on either side of your arm with each turn--if you were taught to do it that way only tug on the lower and upper arm and DON'T tug around your elbow).
While you're learning, plan to stop whatever you're doing and rewrap if:
anything hurts, or
it gets loose over time (hey, that's a good thing because your arm is getting smaller!
), orit starts to unravel (usually happens around the wrist or elbow
).When you've manage to do a good job, congratulate yourself for a job well done, because this is NOT an easy thing, and it has huge emotional aspects as well. I suggest a Double Chocolate Chip Frappuccino from Starbucks, but anything richly chocolate will do.
Keep us posted on your progress--we're all here cheering for you!
Gentle hugs,
Binney0 -
Binney - I was afraid to hang the bandages with their full weight hanging down for fear it would overstretch them ... they're 'short stretch' and didn't want the pressure of the weight to overstretch them. Sounds like my fears aren't an issue?
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Binney is almost dead on with what I do. Sometimes I stand at the bar counter because it's perfect to rest your supplies and arm on when needed. Once my stuff is washed I put it on my drying rack and to prevent the wraps for getting heavy I loop them thru the rack a few times, so some of the rack takes the weight,
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Hugz4u, I have gardening sleeves and onion gauntlet, too....
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Thanks for the comments you lovely ladies... as if I dont have enough to put up with its dialup AGAIN !!!! grrrr BB has crapped out for the 4th time this year. Will be back when I can...we got wild weather at the mo.
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