GRRRRRRRRR I HATE LE..........
Comments
-
Hi amapola36
I to am wondering what under control means. Im on the waiting list to see a lana certified therapists. I am 50 and i had 3 auxillary lymph nodes removed. I just had my second period since my surgery on 1/9/2017 and my breast on the surgery side blew up i did not have any surgery in my breast at this time only lymph nodes removed. drs are telling me its edema but i know better too. My breast get a little sore and swollen but not like this and not only one. I am also feeling all the emotiona as they were only suppose to take 1 node. But it doesnt matter 1 or 10 lymphatic system is damaged regardless. Did you have snb or alnd? I have not met anyone with le only in pictures and here.
0 -
how about this for something to live for? my first grandchild, 3 months old.
0 -
Hi amapola36
I to am wondering what under control means. Im on the waiting list to see a lana certified therapists. I am 50 and i had 3 auxillary lymph nodes removed. I just had my second period since my surgery on 1/9/2017 and my breast on the surgery side blew up i did not have any surgery in my breast at this time only lymph nodes removed. drs are telling me its edema but i know better too. My breast get a little sore and swollen but not like this and not only one. I am also feeling all the emotiona as they were only suppose to take 1 node. But it doesnt matter 1 or 10 lymphatic system is damaged regardless. Did you have snb or alnd? I have not met anyone with le only in pictures and here.
0 -
cliff your grandaughter is beautiful. How mamy times a week do you do therapy? Hopefully they will be able to get it under control. How long after surgery did you find out you had le?
Amapola the umknown is right i try not to get angry either i didnt even have cancer. I try to put that behind me but it always huaunts me. I didn't respond sooner bevause i was in therapy with a regular thrrspist whike i wait. This breast issue has me really depressed the swelling doesn't seem to want to go away. The therapists tells me not to stress but its hard. I have tears in my eyes just writing here. Then i feel guilty with so many strong women on here dealing with le. Im so afraid of whats to come. Have you gotten any of the garments. I have not been meaured yet. How soon after surgery did you start pt?
0 -
Amapola - I wish I had only 17 removed, I had 32! Only one more had "micromets" Apparently they take out a section and the don't know how many will be in there. My arm is only slightly larger than the other one but it bothers me none the same. I was told that if you had a perspiration problem before surgery, you most likely have more nodes than someone who doesn't sweat much. Who knows.
0 -
I was on therapy for a month, the insurance changed at work, ad now I cant afford it, My kids and I learned the massage, and they learned the wrap. it is a bit hard to control when they take out 21 nodes on the same side. it doant affect my job very much, as long as I watch what I am doing, tools held in my left hand tend to end up on the floor if I don't.
0 -
Cliff oh my. Definately cute baby alert. Hope you get lots of babysitting in cause she's a beaut! So worth waking up to see on a regular basis.
Control is when you are stabilized
Flare is like your in control but something tips the scale and you are more bothered by your le. Maybe more pain or swelling or achy. Something that requires jumping onto it to get back control.
Dear cliff and others here have a hard time maintaining control due to serious progression and it's so unfortunate because they are doing all that they can. We really feel for those people and do send gentle cyber hugs. They surely can get some emotional support here and maybe some tips to lesson the burden they have. Grrrrr for sure but We care here because we're in same boat. I know major swelling is bad. A le pump most of the time is helpful but extremely costly. Insurance sometimes covers it. You might be able to rent one to try out. Here..... I'll just say it for everyone, maybe I'll scream because it merits screaming. DANG LE SUCKS OUR WALLET DRY! I drive an old car because le is not a cheap hobby.
Waiting for email about lazer from auzzie land. I hope they don't ignore a possible sale. Speaking of lazer I'm off to get my tendinitis done. Hoping it's my last treatment. Spendy to.
I'll be first in line to get rid of le beast. Yes I will elbow my way right up to the front line.....Well due to my good nature I'll let Cliff ahead of me!
Edited to add: cliff you have wonderful children that help you wrap. No easy task. Steep learning curve. They are a present👍Cherish them.
0 -
Cliff - just a thought that some of us have to deal with - too much pressure/compression (from garments or wrapping) can cause increased swelling, not lessen it. Just as some need higher levels of pressure/compression to lessen swelling, higher is not good for all - we are each unique.
I am one of those who is very 'sensitive' to compression levels. Any garments higher than the lowest level compression cause my hand to puff up HUGE within 30 min. of putting them on. I don't normally have any swelling issues in my hand - above and below my elbow is my problem area.
7 yrs ago, when first started dealing with LE, the first garments my LET guy ordered were mid-range compression as that's a good 'place' to start. Well, my hand puffed up within a 1/2 hr. So he ordered low level which have to be Custom as they do not make low level OTS (Off The Shelf) that would fit me. Also my gloves have to be Custom as I deal with syndactly (slightly webbed fingers - toes are 'worse'). A bit over a yr ago my LET guy wanted to see if over the yrs there might have been some changes so he ordered me a higher set to try - just as bad as ever - so he ordered a set of what had been using/working for years (I get 2 new sets every 6 months.)
Do you have a night garment? They work on passive as opposed to active as day garments do? Because of my 'silly hands' and trying to get fingers without literally cutting into skin between fingers, my night garment has a gauntlet type hand portion. For me, it works best to use an opera length (elbow length) Isotoner glove under it to give fingers a bit of 'support' they need. I also have 2 light over sleeves to use as needed (IF needed).
It's not at all unusual for those who are left handed to wear their watch on the right side. Hubby is left handed and has always (well at least the 41 yrs we've been married) worn his watch on his right wrist. (I'm right handed and my LE is on right side.)
Just some of thoughts for you (or others) to think about/check out. While many/most do fall into certain 'standards' - not all of us do so sometimes thinking 'out of the box'/the 'usual' is what is necessary at times for some of us.
0 -
No apolizing for anger on the grrr thread. That is what it was made for. Go ahead and rant.
I'm waiting for the Olymphics to come to Seattle so I can enroll in the bandage wrapping competition. Here is what we have done in the past. Get a doctor that is in le denial (easy to find many out there) wrap quickly in bandages and stick him on top of Seattle space needle to sit and think about Le. First one to win gets to yell to doc. "I told you there is such a thing as LE stupid!"
Ok done my rant. It's your turn. Come on get it out! You'll feel a bit better ;
Edited to add. Kicks great suggestions. Maybe cliff is pressure/compression sensitive. Your right we got to think out of box here
0 -
taping your doctor to the space needle, I don't think I could top that one. I just sent my surgeon and staff some flowers thanking them from their biggest hairiest customer so far.
0 -
I just want to say i have great respect for everyone on this forum. You all are handling all this so well and i feel like such a wimp. Everytime i look in the mirror (often) I just want to scream out loud instead my heart feels as if someone is squeezing it and im not even close to having a swollen hand or arm just breast right now. I think of my future and it looks so grim. I love the beach, fishing, horsebackriding,dancing, swimming and i cant see none of this in my future. Grrrrrrrrrr I just want to climb the highest mountain and scream. I'm sorry for feeling this way with just a some swelling. I dont even know what im feeling. I'm afraid im messing up my marriage. How did you guys cope any suggestions it seems this is all i can think about. i have isolated myself from the world and everyone around me. I guess as amapola said im afraid of the unknown having pain all the time (dont have yet) did i mention i live in the country lots of wasps and bees im allergic and every year i get at least one sting. I guess i wont be going outside much. Am i over reacting please someone help. Your honesty and advice are all welcome.
0 -
Tinkerbell - Why do you think you can't go horseback riding, fishing, swimming, beaching, dancing, etc.IF you WANT to just because of dealing with LE? I'm not 'into' dancing or beaching (here in the Black Hills we don't have beaches like I grew up with in SW FL) but I do ride/care for our horses (ride my bicycle too), swim, boat, fish, mow my grass with my push mower and a lot of other activities. I refuse to not live/love every minute I am blessed to have to the utmost I can. IF/When 'something' might happen, then I'll deal with it the best I can. But I won't live in fear and deny myself (and my Beloved Ones) of every precious moment we can have because 'something unknown' MIGHT happen eventually.Would I rather not need to deal with the minor/handleable inconviences of LE - OF COURSE! But I'll take it and love living in the 'sunshine' rather than dwelling/existing in darkness.
0 -
Tinker you have some valid reasons to be scared. It's true I have cut out some of my fav activitys but generally speaking we have very fulfilling life's. Such as our girl Kicks who is avid horse lover and fly fisher. It's true she could get kicked or a hook in her hand but she has all the tools to deal with it.
We keep antibiotic salve and bandaids on hand. Also a prescription of antibiotics on hand incase we can't get to emerg if travelling etc.
Also if your going to get bit then dress the bite immediately (keep in purse at all time) and don't scratch. I remember right off the bat I pricked my finger with pin at store. I was freaked but now I just dress it, keep it clean and move on. I wear gloves when handling meat thinking it stops bacteria from entering into micro tears in my skin and so far no cellulitis infections.
I wear a bug shirt for mosquitos and wear white when I'm gardening near bees to detract. Never a flowered shirt! I respect them and don't go near them while they are super busy. This means late in the day or when it's colder when they are dopey. I sit in shade mostly with a sun shirt on. There is always a risk but I have to live. It's not all doom and gloom. It did get what I thought was a hit and run sting this year and took care asap. No problem but I was concerned which is right to be and took immediate care and continued with life.
It sounds like you are very anxious and isolating yourself will do no good. Consider professional advice to calm your nerves quickly. While we can offer you support,a couple counselling sessions will squash your fears. Trust me it works I've done it! I'm number one worry wart. If the sky is falling I'm first to even know about it.But as you can see from my post I have moved on with life.
Thank you so much for reaching out we are listening. You will be ok
Edited to add; thanks kicks you posted just as I was composing.
0 -
Thank you kicks and hugz4u Im trying hard to cope and your kind words do help. I guess i wish i can get an appointment we the lana le therapist. I would feel much better and probably get the best care. I just feel im up in the air with all this. I know how to do mld on my arm but not my boob. I looked on you tube but it doesn't seem to work. I wish i hadn't quit drinking my lwine cause i really need a drink right around now. But with my luck it will back fire on me.
I'm strong im just going through other family issues with my mom and dad. My mom seems to be forgetting everything spoke to he dr today made apt for her. My dad might have recurrance prostate cancer after 17 yrs ned. So II have to be strong. Today i just broke to pieces. Sorry for the melt down and thank you again.
0 -
Tinkerbell - as Hugz says - rant all you want. That's what the title of this thread refers to. When you get a chance, you may wan to add to your profile the date of your surgery and some more specifics - like how many nodes were removed - it would be useful.
Hugz - what type of antibiotics do you keep on hand? I will be traveling later this month and out in "the wild" quite a bit. It's probably a good idea to take something with me. (oh darn, I never can remember which is worse at causing yeast infections - cilllins or mycins - but I think it's the latter - sorry if that's TMI)
0 -
🌴🐊🌵 YUP 😏 - I' m WEIRD and so DIFFERENT than many/most others but then no 2 of us are exactly the same (THANKFULLY - I wouldn't want the world to be inhabitated by 'clones' of me!) (I just thought the palm, gator and cactus were cute).
I've never heard that a white shirt would keep bees away.
Will be back later - have to take Buggsy (my Mini Rex Bunny) for his walk before it starts snowing..
0 -
I just noticed a mention of fly fishing. I'm in Australia, and fly fishing groups often hold retreats for women with BC. If there is something in your area, you should go, lots of fun. I have LE in my right arm, and was a bit concerned at first, but had no problems at all.
0 -
Here in the States, we have a nationwide organization, 'Casting For Recovery', which has weekend Retreats (at very nice places) all over the country for BC Survivors (at no cost to participants). It is a weekend (or week days) of getting together with others who are BC Survivors and get taught basic fly tieing, basic fly fishing techniques and spend a day fishing with a flyfishing guide.
It is a great experience - not just learning about fly fishing if you have no experience but being with other BCers in a Retreat situation. I did the Retreat a yr ago last Oct (already did flyfishing - part learned through Project Healing Waters which is a program for Veterans) and it was such an uplifting experience. I was supposed to be a Riiver Guide there last Oct but 'stupid little car's starter decided to 'shoot it's wad' on the way to NE so couldn't make it.
0 -
Freya - just reread your last post. I am also right handed with right LE. I've never had any problems with flyfishing. Actually, the more active I am (including flyfishing) the less LE I deal with. My LET guy is also a flyfisher and definitely approves of my flyfishing.
0 -
Anapola, a persons arm may never go back to original size but if your controlling it by wearing sleeve and hand gear etc. it helps to stabilize it from getting bigger or progressing. Flat knit garments worn help push out the fluid that has no way out so you have it under control.
So basically I'm in garments for life (with little swelling and a normal looking arm) but if I do something that overtaxed the lymph system like gardening for many many hours without resting arm I get very tired achy hot like arms for a few days so I have to elevate and baby my arm until it feels like how it did the few days before I flared it. Everyone's flares and controls are different. Each le person is very different but we can generalize to help eachother out. That said if I didn't take care of a flare I could swell and get bigger and more permanent damage to the arm.
Kicks: wearing white doesn't ward off bees your just so much more uninteresting compared to bright flower like colors. That's why bee keepers wear white.
0 -
kicks..I do not have LE, but I do read posts on many different threads and have learned so much from all the marvelous women and men who post information and personal stories. I am glad to be reminded of the 'Casting for Recovery' program in my state. I had heard of this organization some time ago on one of the threads, but then forgot about it. I'll apply for a fall position.
0 -
Amapola - basically once LE raises it's ugly head - it is an on going/daily issue to deal with to 'control/keep under control'. What we, individually, have to do is different and what 'works' for one does not work for all.
For me, it is day garments (light compression) when I am 'up', night garment over night, and doing a cycle daily on my FlexiTouch (MLD machine) to keep 'under control'. Also being as active as the season allows.
As hugz4u said - LE is something that has to be dealt with daily for life once it developed. Not all of us are the same so we each have to do what works for us.
0 -
minustwo. I have keflex antibiotic on hand. Goes by a newer name though.500 mg dose There is another one also. Can't remember but both great for soft tissue infections like dreaded cellulitis beast. Start if you can't get to emergency right away if you suspect cellultus.
See Tinkerbell we get prepared just incase. Makes life easier with LE. Type in search on our threads for cellulitis. Good for newbies to learn about this as it's very serious but you probably will never get it. Just good to be watchful. Tinkerbell don't get tooanxious about it. Your in good hands here. Your so smart to get educated
0 -
Tinker. . .I was diagnosed with truncal LE about 20 months after BMX. I had 4 nodes taken on one side but LE on both. Some swelling & lots of nerve pain in both breasts and under node arm. I did LE therapy for 4 months last year. I tried compression tanks but could not find one that was not too tight yet still gave the right coverage. What helped me most was switching to the LE diet (gluten-free, no artifical preservatives or sweetners).
I accidentally ate a dish with gluten last Friday and I swelled up and spent the weekend in pain. Better now & vow to be more careful from now on.
Scottie
0 -
Kicks, I think we are quite similar in our attitude to this. I decided that BC could have my breast and shorten my life span, but it would just have to learn to fit into my lifestyle, not the other way around. I grew up on a cattle station, so could ride before I could walk, we love fishing, kayaking, hiking etc. Sometimes I pay the price for overdoing things, my arm will never be the same size as the other one again, but I still do the things that make my life enjoyable. The only thing I gave up was skydiving, I didn't have the strength to flare (put the brakes on) to land.
Having said that, I just managed to tip half a litre of boiling sugar syrup over my LE arm. Who knew canning pears would be the dangerous thing lol. To top it all off, I had chemo this morning. The language coming out of my mouth would make a sailor blush.
0 -
hugz and minustwo, I have cloxacillin 500mg qid on hand as needed. If I need iv antibiotics for a cellulitis instead of the oral I go to ER and they give me whatever they give me for 2-4 days then they give me a prescription to take keflex after the 2 or 4 days. The doc gave me keflex instead of Cloxacillin when I went on a trip (flying) to hopefully ward off need for iv antibiotics if I got an infection. His explanation was it's not that keflex is 'better', but it treats a wider spectrum of infections. I'm in Canada, though, and treatment protocols aren't always the same as the States.
0 -
Is it just me, or does anyone else find Keflex smells really bad? I have to air it out for a while before I can take it.
I have ended up with about a 4" area from the wrist up with 2nd degree burns, nicely blistered. On double dose of Keflex for 48 hrs, with moist dressings held on with a light tube bandage (no compression).
0 -
Wholenewworld. The Franato cami I would say is medium compression from under bust to hips. Lighter compression above and a strip at bottom. There is gathering for shaping between breasts but I would not call it supportive of breasts. I wear a genie bra underneath for support and to hold prosthesis.
0 -
OMG Freya! So sorry about your burns!
0 -
Freya good thing your on top of it. When I burnt my whole hand with blisters my le therapist dressed it with my doc prescription of flamazine that I brought then we wrapped the hand to keep it from swelling. Wen to her every couple days to change dressing. Healed nice but yes I do think it tipped my scale towards le in hand.
Goldie sounds like you have the rights tools and I see you have recurring cellulitis so maybe I will looking to you for help one day. Thx for dropping in. I'm in Canada to!
Ok off for my once a month mld just to keep on top of things.
0
