GRRRRRRRRR I HATE LE..........
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I'm new to this discussion... thank you, thank you, thank you to all of you!
I'm relatively new to LE (2 months post air travel w/o sleeve I forgot to wear - and no one ever recommended a glove!). My family and even my therapist don't "get it", so I'm very relieved to have stumbled upon this discussion while searching for a discussion on cellulitis. Last week, I had to have my implant (L-prophylactic side) removed due to a breast infection / cellulitis.... Just as I was starting to get some semblance of normalcy back and was looking for a job after IIIC dx two years ago.
I haven't worked in 3 years, our finances are decimated, using a computer keyboard makes LE worse so don't know what kind of work I can do. Lots of uncertainties.
Thanks for listening!0 -
Luonnotar - My LE wasn't happy when I first got my home computer job but even though this is very funny looking, I found if I put pillows under my arms and a pillow and board under my keyboard - with the little bit of elevation, my arms stopped aching and I am actually doing pretty well now. I've been doing this job for just over 2 years. The LE therapist I have loves to experiment and we have found some pretty weird ideas actually work for me.. the picture bellow is my computer set up - I have 2 little travel pillows that sit on the arms of my chair and I recline a bit with my feet up on a stool.
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Luon, Welcome to our threads. You will soon realize that we are a great support system. Do check out the site stepup-speakout.org. Some girls here made the site and it is really helpful for dealing with LE.
Ask any questions, None are considered dumb.
Regarding working with computers. Some girls work standing up with their laptop on a bar counter. I am fortunate to have a work station at my job that allows me to raise or lower my keyboard tray. I stand sometimes.
I also do MLD lebed opening during my break which is about 10-15 minutes. Google lebed method on you tube and watch each segment? You can also order the DVD from Lebed method website. It helps drain the lymph fluid.
Do belly breaths, raise arm straight in air and pump fist slowly 25 times, get the fluid moving. I like to walk with my arms bent like I am jogging so the fluid doesn't collect to the fingers. You probably have had the feeling before when you jog with your arms down that you get swollen fingers, This is helpful for that.
We are all different so if something we suggests doesn't work let us know and we will come up with other ideas.
Regarding family, my DH years ago said when first diagnosed, Aren't you overreacting with this LE, I don't see other people with sleeves and you don't look swollen. That comment really hurt but it was only ignorance. He gets it now because I don't do the heavy activities I use to and he sees my life has changed because of LE. I Won't help him lift a couch or anything more than 10 -15 pounds. He has accepted it although he tends to ignore my LE. He will assist me with swell spots placement, rolling bandages etc if I ask him but generally I keep him out of it. DH ignores his own serious health diseases and won't talk about them so how can I expect him to pay attention to mine. You have to figure out what is best for you. The rest of the family is wonderful, my sister is my arms. She will do ANYTHING for me. Even my 89 yr old mom has accepted that I can't paint her house or scrub her floor anymore. You can get your emotional support here AS WE ARE in your shoes every step of the way.
I am stage 3 also, since 2004 and I am still kicking with this stupid LE. You can adapt even if you hate LE as much as the rest of us. Some of us are flyfisherwomen, farmers, city folks, teachers, office workers, moms and dads so you have a lot to draw from. Do post. DRINK lots of water.0 -
Luon, welcome! You've come to the right place for some helpful advice, lots of shoulders to cry on, a peek at the sometimes strangely funny side of having LE, and some amazing women who give all of that and more just for the asking. Hearts are way bigger than arms around here! Everyone here 'gets' it so ask, sigh, cry or rant away. Hugz's post here is quite serious, but she also has an incredible sense of humor that helps keep my sanity in check and I've come to count on her for that. One of the side benefits of my crazy job is that I travel to all kinds of places and I've managed to meet six women from this forum in person, every single one as amazing in person as I've come to know here. I'm not one to think there's usually a silver lining in life's clouds, but I have to say that I'm truly grateful for the opportunity to meet people here, never mind the stinkin' reason it happened.
I love gmafoley's photo, and she posted it once before when I was looking for ideas to make keyboard work more realistic for me. I took a cue from her fiesta of pillows (only not quite that elaborate!) and the result has been terrific.
Keep us posted on how you are doing--
Carol0 -
Hey all! Just making sure you all are still grrrrring. If your not able to then I can grrr for you. HERE GOES!
GRRRRRRRRRRRRRRRRRRRRRRR to LE!
Do all have a great holiday coming up next week. You probably are all busy with that so you have not time to grrrr. Maybe that is a good thing to get our mind off of grrrring once in a while.
Hugzzzzzzz for all of you and do post if you are having troubles during your holiday or whenever.
Luon, How is it going? Please take care, We are here for you.0 -
I am still grrrrring, but much of it is from this stupid neuropathy which makes my fingers hurt, combined with fragile fingernails from the Afinitor which are torn and catch and snag my LE garments as well as other clothes, which then pull the nails up further and tear them into the nailbed further .... I would still be miserable with hands and fingers that hurt and don't work even WITHOUT the LE, but life gets harder some days, and then other days things let up for a bit. I am waiting for that let-up to come SOON!!!!
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Linda all I can say is Im so sorry about your nails and OF COURSE it goes without saying...gentle warm hugs of support for the neuropathy which I despise with a passion . I so hear you on the nails thing. I put some snags in my last brand spanking NEW garment. grrrrr. I have to be so careful not to cause these dang loops in my mitts too.0 -
My left hand (LE SIDE) falls asleep during the night. Is this from LE or from
Arimidex - I know both can cause it. Is hand falling asleep normal with LE?
I do not wear any compression garments at night. I notice it happens if I end
up on my left side.0 -
Linda, I love you grrr icon! It reflects perfectly on how we feel. I think we should use it as our mascot for the Olymphic events we are training for this winter.
Denise, It sounds like you may be sleeping on your arm. Try on your back and see what happens. Or try propping up your arm on a pillow if you sleep on your side. I know it is hard to keep off that arm when your sleeping and have no control over your body.0 -
Denise didn't remember that as a SE from Arimidex, but Ive had what you describe too. Im thinking its more LE. I know it's hard but we're better off not putting any pressure on that side, like lying on our arms. What a pain.
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HELP.......I need to see a Derm.......a spot on my LE arm is not looking good.......If it is Basal cell, or Squamous, and it needs to be removed....what can I expect.....
Many Dr's are clueless about LE, and how to handle it.....has anyone ever had this happen, and how did you make out..
Really upset ever this LE...2 1/2 years, and nothing but screw ups by the best measures, custom sleeve makers, and LE therapist who have done little (yet tops in their field..LANA members), other then me pay close to $1,000 in co-pays for NO RESULT....
Anyone out there who can advise me before I make the appt........went 2 months ago to a Derm.....no idea how she missed this.....here goes another $40.00, for a 10 minute visit....so fed up....0 -
Hey ladies I wanted to post a link here for you all to read. I use a PS group out of San Antonio, TX PRMA. Dr. Ledoux is my PS. They are one of the top in their field in the United States. This year they have published a couple of studies that have to do with DIEP flap that I thought you all would be interested in. The most recent is they they are using a superficial vein along with the main vein to increase success rate of the transfer. The study has a 99% success rate. The other two studies are using the Vascular Lymph node transfer for those suffering with Lymphodema and also a study for obese patients using DIEP successfully. The group does over 500 DIEP flaps a year. Here is a link to their news media and articles you can check out. Hope this is helpful to someone. http://prma-enhance.com/useful-resources/media0 -
Well seems that I am being questioned about my motives here. I am a breast cancer patient and I do not work for PRMA. I just happen to love my PS. I had a very bad experience with my first BS. Although I did not have DIEP flap because I was not a good candidate not because I did not want to and I have been lucky not to have lymphodema but I do not let my guard down because I am aware it can happen years down the road. I think the work my PS group is doing is amazing and I am passionate about spreading the news of new work being done out in the breast cancer world. I have always thought knowledge is power and if it can help someone else then it is worth it. Sorry if I offended anyone with the multiple post that I had.0 -
Sherry, I am aware of some PS results that show women who have DIEP have lower incidence of LE, probably because of those few nodes going with the transfer. I personally have chosen no reconstruction for a variety of reasons, including wish to do no further procedures, but this IS an interesting finding. Some of the docs are from MD Anderson and U of Chicago and I think also Sloan-Kettering and maybe Mayo.
I checked into the outcomes for treating with lymphatic to venous bypass, and that is also promising. I had to cancel my appointment to see a PS who is doing this procedure because I just don't have it in me to travel that far. Wish there was someone SKILLED in doing this procedure closer to me - I don't even know if I am a candidate for the procedure, so just traveling that far for just an opinion is too hard on me right now. Maybe in the spring if I am feeling better I will try again; then again, by spring, maybe the cold laser treatment (much less invasive) will have helped.... and, gee, while I am engaging in fantasy land, maybe I will have a glove and sleeve that work for me and maybe pigs will be flying!!!!0 -
Linda, flying pigs? That's the easy part!
http://www.flying-pig.co.uk/flying-pig
Hoping along with you that the garments will finally be right,
Binney0 -
Linda--I have not been on the threads in awhile and miss your humor. I remember when you were diag stage IV and you have always been so positive. I really hope you get to feeling better. I have not heard of the cold laser treatment I will have to look into that one. I can't give you flying pigs but I have seen pigs swim at an amusement park.0 -
My grandfather raised hogs and none of them flew, but they did enjoy a good wallow in the mud!0 -
The day they abolish LE is the day when pigs will also be able to fly! I want to see that in my lifetime. Oh and we will all have a grand party won't we? Chocoloate for everyone, even the pigs can wallow in chocolate if we get rid of LE.0 -
OMG Hugz, I hope our remedy doesn't depend on pigs flying but if it does..........fly sweet piggy..............fly!!! I'm afraid I agree with you though. Darn.0 -
Marple. Too funny.
Linda, how is cold lazer doing? Would love to hear.0 -
This is an UN-grrrr!
My longtime primary care doc retired, a lovely woman but someone who knew nada about LE and regrettably had no interest in learning about it, either. I had to argue with her to get a filled keflex prescription, not just once but each year. Her replacement is a newly-minted doctor with whom I met for the first time this morning to discuss a mole on my LE arm. She judged it not malicious but was all ears when I asked if it might be removed anyway, because it protrudes and has ripped slightly several times when I've donned and doffed LE garments. She agreed 100%, putting my concern about the potential for infection in her own words, and then she took care of it right then and there. She also responded immediately to the keflex replacement request.
I was unsure how I felt about being assigned to an inexperienced MD, and I certainly can change that if I like, but this was such a great experience, I'm thinking she's a keeper. I wonder if LE is getting a little more time and attention in medical training these days. Wouldn't that be terrific?0 -
That is a great UN-grrrr Carol.0 -
Something to be extra thankful for this week!0 -
Question - its been a while since I have had any.. Got bit by something in the axilla area. I know I need to watch it but think I remember something about not doing MLD and wear sleeve? Am I correct?0 -
If there are signs of inflammation (infection) then no to MLD and garments but if it's simply a bite I see no reason to stop doing either. JMHO.0 -
starting again with LE.....gave up, but it is not looking good, so I made another appt........told them "you give me the best LE therapist you have in the facility.......tired of getting people who waste my time, and money, and do it because they have no idea what they should be doing.....
She apologized and said "I just put you with our best person"..........and the story continues.......here goes another fortune spent.........could have went on a luxury vacation with ehat I have spent, with no result0 -
Oh Ducky, how discouraging. And it's darned easy to get discouraged. I too pay out of pocket for LE therapy so I certainly hear you regarding the expense. Fingers crossed you get a good therapist. If not, then maybe it's time to go further afield. Lets hope it doesn't come to that. And when it works.........it's money well spent!0 -
Marple spent close to $900.00 in co-pays , went 2 different times for custom fitting......sleeves were made wrong both times......got fed up and said "the hell with it".........that was 8 months ago, but my arm is not feeling good now, so will give it another try.......0 -
Carol, so glad to hear of a positive experience with your new PCP!
Ducky & Marple, so sorry this sucks and is so costly.
GmaF thanks for asking the question - I have a little blister on my arm from doing something stupid, and am watching it closely for any signs of infection, using polysporin on it just in case, and wondered about the sleeve. Grrrrr....
I have my last laser treatment tomorrow, then have a break for about a month I think, then do the second cycle. I think it is 12 treatments over 4 weeks, then 4 or 8 weeks off (can't remember), then repeat the 12 treatments. I don't really know if it is doing much good, except that the LE DOES seem to be stabilizing, my hand has been much easier to control. I still have swelling in my wrist off and on, and the forearm still gets very tense with fluid, but it doesn't seem to ache as much. Also the weather has been cold and rainy more consistently, without the ups and downs of barometric pressure. So many factors, so hard to figure out what is working and what is not.0 -
hi ladies from down under!!! im a newbie to LE as well. Ive just started wearing my sleeve and im already feeling crap. i wanted to get a coloured one but my therapist said the company that makes them doesnt do alot of good testing on their garments. she thought a flesh coloured one from this other company would be better. well because i have fair skin and its darker than my skin colour it looks so weird!!! i was on the way to getting my confidence back after being 2 years out post surgery but having to wear this has just made me feel really crappy again. although i dont have to wear it during the night only from when i get up to just after dinner time so at least im greatful for that but it doesnt help its summer here so i cant really hide it well. GRRRRRRRRRRRRRRRRRRRRRRR0
