GRRRRRRRRR I HATE LE..........
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Akk!!! I read your post & it gives me a glimpse of my possible future (if I make it). I had surgery in October, & I have already noticed the lymphedema in my left arm. I just went to a specialist who wants me to have therapy 3 x a week for 6 weeks, then fit me for a sleeve & glove. I know that lymphedema is more than a cosmetic issue because I had a friend who died from it. He had severe lymphedema all over his body (some genetic thing). He continually ended up in the hospital from infections getting out of hand. He finally ended up with too much around his heart & he passed while talking on the phone with me. I guess I'm venting too. I feel that the medical field should educate people about it thoroughly & early to possibly head off problems. The information I obtained was becauseI did the research, knowing about my friend. Doctors didn't caution me & wouldn't have even noticed it had happened if I hadn't told them. I like to play the piano & use the computer, but I am praying it won't get bad enough to get into my hand. I know it is uncomfortable & it makes you feel self-conscious in clothing that shows it. I can't imagine them telling you that your profession was suited for lymphedema. I would think that the number of hours that you have to hold up your arms & in awkward positions would make it worse. Maybe it would get better if you changed your line of work. A desk job would be less of a strain on your arm. Just a thought. I have trouble because I keep forgetting you aren't supposed to lift with it. I have a bouncing Bassett who thinks Mommy should act the same as she did before surgery. Poor Flash. He's really having a tough time with me having lymphedema. I wonder if they offer any kind of counseling to help our pets cope with the change..
Well, I TRY to find humor in everything, but lately it's been getting harder. I am exhausted! I wish you well & will say a prayer for you! 0 -
2Blessed - I found out about LE from doing some online research, too. Drs were of no help. The info on this site has been a lifesaver to me in many ways. When I first started, I was doing about 3 days per week for awhile. When I flare, I go back to that routine for a couple weeks and it helps me gain control. I also wear compression during the day, as well as for sleeping. It takes some time, but eventually we kind of figure out what we need to stay stable. I'm glad you're here.
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2Blessed, I registered on the Stanford LE registry, and they asked "which of your doctors diagnosed you"--that would be none, and "which of your doctors follows you"--again, nada.
I diagnosed myself, and when my original treatment was beyond horrible, Binney kindly sent me pm's on a daily basis, getting me the help I needed.
I have a great LE therapist, and she and I were revisiting how I found her and how she swooped in to help--literally drove to my house on a Saturday--she was still employed by the hospital and wouldn't take a penny yet, and showed me MLD and bandaging and then took over a couple weeks later.
I figured out I had axillary web by googling "webs in axilla after breast surgery".
So, where's the button in the registry to say: "Self diagnosed, and treated by LE therapist." Of all my doctors, my primary is the kindest, and will write any script I ask, but admits she doesn't know how to treat LE.
Kira
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It's all so frustrating. After months of my plastic surgeon insisting that I had post-recon surgical swelling, I finally told him I insisted he write a script for an LE eval. Went to a hospital-based LE clinic, where a perometer measured my non-dominant, SNB arm as 10% larger than my dominant, no-nodes-touched arm...meeting the diagnostic criteria for LE...and the clinic physician-self-declared-LE-specialist told me that because there was no pitting, nothing to do about it, saying, 'you hear of subclinical swelling, but I'm not a believer, come back in three or four months and we'll see if it advances any.'
Two weeks later, after a flight across country for work, bam--or should I say puff-- visibly swollen arm, visibly swollen trunk in one spot, and as my reality had been denied, no MLD skill, no compression, feeling helpless, especially knowing I had to fly back home in two days.
When I got home I started calling LE therapists within 90 minutes of home, and the only LANA-certified one in the area told me there's no such thing as truncal LE. kept on calling. No other CLTs in the area went to any of the recognized MLD schools, so I just went with the one ten minutes from home and crossed my fingers.
Gave her the same script my PS had written in the first place (he sent it to me as a pdf as I'm 3 hours from his office) and I re-purposed it. Still not sure if that's legal, so to speak, but insurance seems not to have complained about it, and at last someone is taking me seriously. Then I met with my primary care doc to transfer my LE care from PS to her, and like Kira's doctor, she acknowledges she knows nothing about LE, but she's happy to write prescriptions for therapy, sleeve, back-up keflex, etc.
All this to say that it's astonishing how when it comes to LE, the patient is so often the one driving the bus. What did women do before the Internet brought information to our fingertips? And communities like this one?
Carol
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Carol, they just have their reality denied, ignored and untreated.
See it every day at work.
One of the breast surgeons who I share care with is starting to get on-board, and while she's acknowledging LE exists (shock!) she dictated that the patient is "doing everything humanly possible, even wrapping her arm at night." Yeah, make her think it's overkill....The patient has palpable fibroisis.....
ARGHH
Kira
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I'm very, very frustrated with LE tonight. Sick and tired of being puffy and crabby. I'll spend more time doing MLD and maybe tomorrow will be better. Ugh!!
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here, and listening, ladies.. just as frustrated as everyne, but at least i have a ols pair of gloves/sleeves.. my fitter didn't follow uo with the ins.. so i did.. no new rx needed, auto matic after being dxed... she didn't send it in in time to gottfreid. i called monday, they;re sitting inher office, but "she has no time" to come in and try them on for fit, for 2 weeks!!!it amazes me, it truly does.. i also found out, one of the reasons for the mess up, was, even with an rx; she ordered jobst otc first!!!even though the script was for custom .. weel, that's what you had before.. yes, and that is why i want the custom that was rxed....duh!3jays0
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I haven't been on-line for a long time but just wanted to thank Binney for all the help and information you gave me (and everyone). My breast LE has gone down quite a bit, not gone, and I'm sure it will flare up again once I start radiation therapy, but at least this time I will know what I am dealing with.
I am still in the chemo mode (2nd treatment last Weds), bald as an old coot, and actually okay with it as it makes it sooo much easier to bathe. I get to put lots of scented oil in the water and not have to worry about what the hair will look like when I get out.
but really this post was just to thank Binney, and wish the rest of you good luck.
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Jampus, great to hear you're on top of this, and I'm sure wishing you smooth sailing through the remainder of your treatment. Let us all know how we can help!
Have to admit I too appreciated my hairless state. Might as well enjoy the things we can along this journey!
Hugs,
Binney0 -
Bumping up this thread, as I miss it.
I'm sick and tired of having LE, and I have to take an early flight in a couple of weeks: to go to a national LE board meeting---where I'd love to see more patient centered work/mission occur--and I realized that to make it to my early flight, I'll have to get up that much earlier to deal with unwrapping and garments.
I'm getting very sick and tired of national LE organizations who consider people who advocate for LE as something to be concerned about: "you know, we're NOT advocates here." Then why do you exist??
GRRRRRR
On the positive side--yeah, I know I haven't been particularly positive lately--I got put on a grant, by the head of the first LE clinic I ever went to--not a very sucessful experience, but found my LE therapist as a former employee of the clinic--to be taught the Julie Silver/Oncology Rehab LLC program. So, we've made our peace, and I hope something really good comes of it.The head of the clinic is a SUSO fan, so we're in agreement, and her heart is in the right place, if only her therapist hadn't insisted that LE never starts in the hand.....
Kira
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Kira - GRRRRRR for sure!
never start in the hand huh? ... hmmmm ... well mine started in my hand ... what are we to them? Crazy? Anamolies? (Shakes head) ... I hate this damn condition. I hate it!
In the midst of a flare right now for no apparent reason ... I hurt, ache, swollen ... wrists hurt ... elbows hurt ... it's always ever been in my left fingers/hand/arm ... now my right elbow hurts. WTH? Am I going to have it in my right arm too?
I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT! I HATE IT ! I HATE IT! I HATE IT! I HATE IT!
I'm in a really bad place right now.
Thank you, Kira and Binney and others who fight for us. Thank you for going to this board meeting. I pray that they listen to you and help can be found for all of us.
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Dawn-Hope, I hate it too, and I really, really hope it's just a sore elbow on the right.
I told Binney I was going to get an LE advocate tee shirt of a slightly swollen clenched fist (yeah, it's in my HAND) over a blue butterfly, and now she wants it to show fangs or something--but we avoid punctures!
Makes me nuts that having LE, and speaking up against some of the entrenched powers that be who tend to treat patients with condescension, makes you suspect by the organizations that are created to help people with LE.
There's no money or glory in LE research, and the best researchers tend to be those who either have it or have a loved one with it. The others just don't get it in a profound way--IMO.
Dawn-Hope, LE wears you down, it just does.
Huge hopes for a big improvement soon, and that right arm better settle down immediately.
Kira
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i just wanted to say, i agree; with ALL of it!!this is the hardest time of the year for me, cold fronts coming in, going out affect me terribly!!!my new gloves/sleeves are in, but le fitter doesnt have TIME for 2 wks, since she didn't order them in a timely manner!!!!
im trying to look on the "bright " side. and i'll get them.. for now, i have an old, worn pair for my hands, and otc jobst.. at least im covered thank God for you ladies!!!..3jays
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Things that make me go hmmmmmmm......
In the midst of a pretty bad flare. Was asked out for lunch today and they wanted to go to "backyard burger." I said my LE is flaring and that wouldn't be good. We discussed other places but I only had limited time so said yes to bb. Thought maybe a salad or just a plain potato but when I got there, the rebel in me took over and was like, "Screw it. If I'm going to swell, let me swell for a reason." And I ordered a black and bleu bacon cheeseburger. I've spent the last two weeks being so good, eating organic, whole foods and guess what? When I took my gloves and sleeves off tonight, my swelling is the best it's been since this most recent flare!?
What's that about? Maybe I need to eat bacon, bleu cheese and red meat everyday.
I will never understand this stupid condition. Makes me crazy.
That is my grrrrrrrrrrrrrr for the night, albeit a thankful grrrrrrrrrrr.0 -
D-H, gotta love it! Hope you savored every bite and dreamed about it last night!
(How's everything this morning?) Happy hugs,
Binney0 -
I am swollen all over I had the stomach bug Friday and have been eating soup all weekend and crackers. What else was I suppose to eat. lol For the future is there anything lower sodium out there that I should stock up on? I was using Campbell's Health Request.
So what is the best way to get rid of this fluid? I can eat now but I still feel yuck. How can two days of being sick make me so weak feeling all over. My legs felt like jello walking into the store today. Drinking lots.
Passing some brownies.
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Binney4 - I didn't dream but my tummy sure was happy!
. I was pretty swollen this morning, more than usual but I also didn't sleep long enough. Trying to take extra precautions today and drink tons of water. In the end, it was still totally worth it.
Kittydog - soup is one thing that whatever type, style, or brand ...it makes me swell. The only soup that hasn't done so is homemade soup. But sometimes you gotta do what you have to do. Hope you get better soon.xo0 -
question: i know you wear gottfreid, or have in the past Binney:
my new sleeves came in. got them today in the 18-20 but they just don't have any give.. they had more in the higher compression.. but im like you, less is more.
the question is, for any of you who know: do the lesser compression also have less stretch??
the gottfreid does reduce the swelling better, but this one just doesn't stretch to accomadate the elbow.. it folds in on itself.
im going with juzo; or jobst. for the next set. any suggestions? ive been using jobst otc, and they're comfortable, nice and soft. are the customs the same? thanks.. Happy valentines day to my swell sisters. brownies all round........3jays
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3Jays, I just got new garments recently and they're the same fabric as previous ones, so I don't know what's up with that. New garments are always a surprise to me, as the ones I was wearing before are always so much limper by the time I re-order (every 6 months). Mine have a very soft fabric lining over the entire elbow section, and a seam across the inside elbow bend that eliminates the excess fabric that always scrunches up in that area. Try washing them and then wearing them for a couple of days and see if they soften up enough to work for you.
I do have a pair of Juzo DreamSleeves that I wear when I'm flaring, because they have more "give," but they don't make gloves in that fabric, even if you order custom gloves. If the Jobst off-the-shelf are working for you, why do you need customs? Just curious.
My daughter made us a giant heart-shaped chocolate whoopie-pie cake with that luscious marshmellow-y filling -- oooooh!
Happy, happy Valentine's!
Binney0 -
Tonight's 'Grey's Anatomy' has a story line on LE and lymph node transplant. It came on at 9 pm Eastern on ABC network. I didn't realize when they started talking about lymph node transplant/mast but when they showed the patient she has both arms very swelled that it was dealing with LE. If you missed it tonight you can watch it online on ABC.com.
Sheila
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Ha! My daughter called to tell me about it, but I already missed a good bit. I'm going to watch it online in the morning. Any public light being shed on the subject is a good light!
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Hey, Binney, is you daughter going to share the recipe?
In the interests of helping our LE, of course.
Hope you had a good Valentine's Day!
Leah
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thanks, binney: the reason i get the custonm, is of course, for the gloves.. gpttfried is right on with those. got one set in black, but i like the jobst ones i lost for everyday; so gonna try to get a set from them.. i get 2 sets a year.. i'll try washing these, ans see... i still will wear the otc the most, im sure. the gottfreid takes the swelling down quicker, so i just wear them when im reading at night.. thanks for the suggestions...3jays0
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ok, my take on the Grey's Anatomy. They mentioned her previous surgeries and treatments specifically once when her original doctor was trying to talk the two other doctors out of the transfer surgery. They only showed her with her swelled arms in one scene and never mentioned Lymphedema as being the cause of her swelled arms, she only talked to the original doctor about how painful it was and she wanted to have the use of her arms again to brush her hair. The original doctor insisted that the new doctor read the entire chart prior to surgery to get a better understanding of all the damage she had from the previous surgery. They showed the OR when they were doing the transfer but never went back to show if the transfer worked. It was only one of the 'filler' story lines and not a main story line.
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lvtwqot, thanks for the info and then the update. I was excited to watch, but think I think I'll just pass after reading your update.
This is actually the complete opposite of a grrrrr....., but I'll post any way. Had a mammogram yesterday, it has been just short of a year since the one that started the ball rolling for me. All was clear. Yay! And then saw RO, it's been three months since I finished radiation. Both the RO and his nurse were thrilled with how my arm and hand looked. They both remembered how big and swollen it was during radiation and were thrilled with how far it has come. Wrapping and wearing the sleeves and the massage and all that really did work and was worth the effort. And I am really excited to have just one more formal class with the Physical Activity for Lymphedema exercise classes I am taking. Then I'll be doing them on my own 2 or 3 times per week. Really glad to feel some strength coming back to me. Hope it's okay to post this on the Grrrrr..... thread.
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Ah, Kay, great news is always welcome anywhere!
You must really be flying high. Enjoy!Doing a happy dance right along with you!
Binney0 -
Actually, they did mention lymphedema in the Grey's Anatomy episode, but it was in passing, while her orignal doctor was visiting her. (At 11:50 on the ABC site's full episode video, her doctor/surgeon says "I know the lymphedema is bad...we just need to be happy the cancer is gone.")
More interesting is the information about lymphedema posted on the Grey's Anatomy site by the show's director of medical research. You can see that here:
http://abc.go.com/shows/greys-anatomy/medical-case-file/ThemeGallery/932047
They don't really show the outcome of the lymph node transfer surgery she has.
I thought it was interesting that it was included in the show.
LisaAlissa
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OK, I missed her mentioning Lympedema in the episode. Thanks.
Sheila
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"I know the lymphedema is bad...we just need to be happy the cancer is gone."
Well, okay, it's certainly realistic that a surgeon would say that. But, well...grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!
Binney 0 -
Binney - I had the same reaction to that quote. We run into that attitude too much from doctors, not only for LE issues, but other QOL issues like s/e from AIs, etc. It's like they're saying, "We got rid of the cancer, dammit, so shut up about everything else." Grrrrrrrrrrr!
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