GRRRRRRRRR I HATE LE..........
Comments
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In my more sane moments I have been doing my best to educate people when they ask about what happened to my arm/hand. I tell them I have lymphedema, a swelling that results from treatment for breast cancer. That is all I say initially. Most say something like, gee, I didn't know, am so sorry. And I believe they genuinely are. I do not try to embarrass them, and I don't think any of them HAVE been embarrassed. The many who cuts my grass asked about it a few weeks ago. Last week he asked ow my arm was doing, and I said "hanging in there." He then asked if this was permanent, and I said "pretty much, yes." He was again sorry and kind. I had one young man ask me about it in the grocery store checkout line - he was the checker - and my quick assessment of the situation was that he was not going to understand a quick answer, so I did the joking "ya gotta watch out for my right hook!" and he then asked me if I had watched "the fight" the day before! I laughed, said no, and he then proceeded to tell me all about a boxing match with some big name boxers and he had watched it on TV with his dad and was quite animated about it, not aware that I didn't understand about 95% of what he was talking about, but he was so excited! I laughed all the way to the car!
Still having trouble getting glove and sleeve combo to work. Need to find a sleeve with very relaxed wrist - wondering if the Lymphedivas do that. I will ask on the Gloves & Sleeves thread. Am getting to the point of needing more color in my life than beige!0 -
Excuse me breaking in here, but we are looking to show your faces, names and quotes at our fundraising event in October (www.rockforbreastcancer.org), and would love your help. This event is one of our largest fundraisers of the year and we'll be joined by hundreds of generous donors.
Specifically, we will have two projector screens up during the event, and want to show the people attending the event YOUR faces--- the women of our community, the women who use and rely on BCO ! Having the opportunity to share your photos and quotes that night will reinforce to our donors, in a meaningful and personal way, just how vitally important their contributions are to our community.
For this, we are looking for people willing to share a photo of themselves (either alone or with family, friends, pets, other BCO members, etc.), allow us to use your first name, say where you are from (it can be from anywhere in the world!), and give us a quote on how important BCO is to you. We are looking to have at least 40 people and have (only) a few weeks to work on this.
If you are interested, could you please email Melissa at mjenkins@breastcancer.org, with your photo, first name, where you live, and your quote? Also, PM us if you have any questions!
Thank you, thank you, thank you for helping us!!
Melissa0 -
What is this, nobody has anything to grrrr about?
Well, I got something. Anybody else having their LE aggravated by cold weather? Temps are dropping here to low 50s and my hand is really achy.
First I wanted summer over so my hand would get back to normal. Now it's cold and it's back up to achy. With lymphedema, who needs the Farmer's Almanac? I should start predicting crops with my arms!
Double dang GRRRRRRRR!0 -
I will always grrrrr about having to have IVs and bloodwork in my feet or jugular because I have bilateral LE. I just had stage II of DIEP reconstruction and, miracle of miracles, the nurse anesthetist got it in my foot on the first try. Now I'm trying to remove the permanent marker from my arms that said No Pokes/BP....0 -
Hi! I have lots of questions.
I'm waiting on my referral to get 2 gloves and sleeves. I have one of each but they are the wrong size.
So, being that I really haven't worn them can you tell me how you go about your day with them on? If you go to the bathroom do you just take your glove off so you can wash up? What about going out to lunch/dinner with friends? Do you wear both and take the glove off if you're eating a messy burger? And leave the sleeve on? How about house work? Washing dishes... It just seems like a lot of taking the glove off and putting it back on. Is it OK to take it off and just wear the sleeve for a short bit of time to get things done? I do need the glove because I have hand and finger swelling.
I HATE this!!
Does anyone else feel obsessed with theirs? I do. I'm CONSTANTLY massaging myself or doing some of the exercises while walking around the pumpkin patch on Saturday, just hanging out... I do the MLD and excercises each morning and night.
Have any of you tried any natural remedies that are helping them?
Thanks in advance!!!0 -
mcgis - I'm glad you asked those questions - because I'm just figuring everything out myself. I take the glove off to do dishes, but it occurred to me that I should just cover it with a latex glove instead.
My friggin' glove is always filthy. Raking the lawn, using the garden garden house, patting the dog, cooking - I can't keep it clean. I opened a can of tuna recently, and the oil spilled all over the glove, and I smelled like fish all day. I would definitely take it off for a messy burger though. When my glove comes off I give my hand a good massage and it feels ten times better.
I have swelling in my hand and arm, so I don't usually wear the sleeve on it's own, cu I fid that it pushed the fluid down into my hand. Everybody is different though. On good days - I just wear the glove, and keep my arm elevated as often as possible. When I'm driving it's a good time to keep it raised, or sleeping, resting on a pile of pillows.0 -
Hi mcgis, welcome to the swell club, but we're sorry you had to come. Ask as many questions as you need to. Theres lots of knowledgeable LEers on here.
To answer some of your questions... first, you don't say if youve been to a qualified LEist and were fitted, or if you got your sleeves and gloves OTC. Whatever the case, you need to see a qualified person to assess you. That said, it largely depends on "where your LE is at" as to how much you can get away with. Swelling in the hand can be quite difficult to deal with. You are doing the right thing by doing MLD morning and night. It sounds like you already know things about LE.
I would say for you, with hand swelling, once youre measured properly and get the right fit, it would be wise to keep your glove on. I know this is a royal pain up the butt, but theres things you can do to keep the mitt clean. I use a variety of gloves depending on the situation. Sometimes you can get away with light cotton gloves when you don't need waterproof gloves but need to protect garment from a bit of dry dirt. Rubber gloves for washing up a great. You can get light vinyl gloves for various bathroom situations which if youre careful, can be easily washed and taken off to be re-used a few times. Vinyl gloves are great for prepping food too. I have different sizes for when a looser fit won't be an issue.
For me, I use a gauntlet when I need to do a bit of spadework in the garden as my glove digs in and is hard to get my gardening gloves to fit over comfortably.
Hopefully you can get your swelling down in your hand where this will be an option for you.
Other great things to do to help are to keep well hydrated, don't subject your arm to temperature extremes, keep the salt intake down and watch the salty foods, keep your arm well moisturized, try to avoid any nicks cuts scratches oven burns and the like, but if you do, always have antibiotic cream on hand, exercise is good but very dependent on where youre at and how much you were doing prior. A good rule is work up slowly.
Hope this helps.
Gentle hugs.0 -
I finally got my new sleeve and I hate it. Any body have one with elbow darts in it? If so where are those darn darts suppose to go on the arm?0 -
I trialed this type of sleeve and I think the darts went at the inner crease of the elbow. Was a couple years ago so I can't be 100 percent sure. Oh, I hope this works out for you because I thought the darts were a good idea. I couldn't get the right fit and had to give up on my fitter and went to OTS but I really should be in a custom which then I would order darts. My LEist says custom is way better for containment because of the flat knit.0 -
I second Hugz dart on the inside of the elbow. My first sleeve had that dart and I didn't like it. But maybe it's because the whole sleeve was all wrong but it seemed like another hurdle when donning it, to be sure the dart was in the correct position. GRRRRRRR0 -
Just thinking about how I can handle the sleeve and shaper but I absolutely hate my glove with more hate than my grade 4 teacher making me write lines! Oh.................. and more hate than yucky turnips my mom use to make. GRRRRRRRRRRRRRRRRRRRRRRR to the glove.0 -
Today I just HATE HATE HATE HATE LE!!!!!!!!! Swollen & achy, generally feeling not in top top shape, wondering just how I can do water exercises and NOT overdo since I just can't seem to feel when enough is enough .... water felt so good, rest of day not so much. HATE HATE HATE. (one of the reasons for suffering according to the Buddha - greed & hate & something else I cannot remember right now).
Hugs, y'all!0 -
Hi all.
I am new to Lymphodema and have been getting treatment from a great LE therapist for truncal and arm LE. I am wearing compression , exercising and was doing great. Now I am getting large cords down the front of my stomach, from my breast to my waist. My therapist and MO say ice and Advil?? I have an active job and I wonder if some movement is setting it off.
Any advice? Thanks ladies.0 -
mcgis, have you found the "Coping" page at StepUp-SpeakOut? Lots of suggestions there for dealing with the day-to-day LE garbage. It's here:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm
Lenn, welcome, and I'm sorry you've had to join us, but really glad to hear you have a good therapist on tap. The cords on your trunk sound like Mondor's Disease (which isn't actually a disease, just a temporary condition). You can google it for suggestions, or check out the "Cording" page at StepUp-SpeakOut, since the conditions are similar:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Do be careful of the icing--use a layer or two of fabric between you and the ice pack, and limit the time to 10 or 15 minutes at a time. How it clears up quickly! Keep us posted, please.
Hugs,
Binney0 -
Thanks Binney,
I am icing now and will take it off . Way past 15 minutes. I'll check out the links.
I also have a cord in my axilla that I am dealing with too!! Glad for all the information.0 -
Good Morning - A very cold and wet day here in Toronto, and my hand is super puffy. I know that weather extremes will affect the LE - but I did okay in the heat. Does a big change in the weather take it's toll? I know that everyone is different but I'm still learning my triggers.
Could also be that I had an active week. I was doing a lot of shlepping yesterday. Is it possible that symptoms show up a date later?
I was feeling very Grrrrrr this morning. Went to get my hair cut and saw my big puffy hand in the mirror. Grrrrr. However, things have picked up slightly. Got home soaking wet, put on my pj's, turned on the tv, and the 'Notebook' is on. Things have just got a little bit better.0 -
Hi Janet, it's wet and dreary here too. Yes, barometric pressure most certainly can affect LE. And with your busy week perhaps it's a combination that's not good for you. Did you indulge in salty foods too? Anyway, drink lots of water, do some fist pumps (during commercials of course) and keep your arm/hand elevated. A little R&R might be all you need. I hope so.0 -
Marple - Thanks. I didn't have particularly salty foods, but now that the weather is cooler, I've cut down on water. And though I normally do my daily self-massage, I missed a few days. I'm good with the elevation, but as for the fist pumps, I am always grateful for the reminder.
Stay warm today. Janet0 -
I need to bitch. This is my first year with lymphedema. What a pain. I thought it was miserable when the sleeve was so hot back in July and August (and it was). I thought it was tough to wear something sleeveless out in public.....but I did it. I thought long sleeves would cover my "garment" and make it less noticeable. I am one of those who do want decorated sleeves....I do not want the attention. I am glad they are available for those who do....though pricey. My affected arm is not awful, but it is consistently larger, when you add the sleeve, the clothing is tight or the clothing sort of gets caught on the sleeve so it does not move. I find myself adjusting that arm a good bit....especially on knit clothing ....which is of course what you wear a lot in cooler weather.
I just had to bitch....I know there are much worse problems in this world....but this is such a pain. When you add in the extra time in your day for the pump or massage and making sure you get sleeves washed.....and oh yes, the aches.....It really is a pain.0 -
Last week I was in a 'face to face' meeting with the MIS director and others in the department rather than the video conference meetings we usually have in my company and it was one of the first cool days. One of the members at the meeting asked ' where was the rest of my glove?' (I wear one gauntlet) then asked if I had carpal tunnel problems. I just said, 'This is what I wear because of the complications from my bc surgery 6 years ago'. The MIS director turned and looked at me questioningly. I took off the gauntlet and tried showing him where the swelling is but the first person said, I don't see what you are talking about. I said that is because the gauntlet is helping keep the swelling down. sometimes I hate questions and then, they don't want to get an explanation or try to come up with their own.
Sheila0 -
I just want to let you know that I had my flu shot last week in my thigh. The nurse didn't give me any problem. I went into the nurses' room at the clinc, told her it had to be in my thigh, and all she said was, "OK, lock the door". Well, she knew I wasn't picking up my skirt in public!
So if you get questions or problems or someone who says "It can't be done", just know that it can.
Leah0 -
Anybody here diabetic too? I just got DX last week. I went in for my training today but they figured I could figured it out and thought I needed more medical attention instead. I went Friday with Bronchitus and it was much worse today. I got a lovely shot in my left hip. Figured it was better than the right side where all the LE is worse.
Anyway if so were do you prick for your blood test all the time. Three times a day will start hurting on the five fingers I have useable. Why did I have to still have neuropathy too. Just makes the pain worse. grrrr.0 -
Has anyone seen Dr. David Chang at MD Anderson for LE? I saw the video and his bio. Sounds interesting.
http://faculty.mdanderson.org/David_Chang/
http://m.youtube.com/watch?v=35JlSdsDzbU&desktop_uri=%2Fwatch%3Fv%3D35JlSdsDzbU
And as this is my first year with LE also, wonder if weather changes in general affect pain and swelling. Have had one of my worst arm days on one of the most gorgeous cool fall days,0 -
I am just seeing this. I wanted to take a moment to inform this beautiful community of caring individuals and professionals that my company WarriorWear does nOT make profit. EVERY CENT we earn goes back to help the community in which we live. Since 2008 I have taken only one owner distribution of $40 to buy myself a backpack so that I didn't put weight on my arm affected with Lymphedema. I chose to be a part of an online sight to seek info for me personally and to help others personally. I hope you all know that I feel horrible if I violated any rules.
Just check out the links page and you will see that we are active in our community on a personal level. I never once mention my company unless asked by the press and if it will help promote healthy choices for women with Breast Cancer and/or Lymphedema.
With respect
Carolyn Newman0 -
Hello Mods, how did the fundraiser go? I hope you got lots of good stories and that generous folks opened their wallets that night! What you do for us is really, really wonderful.0 -
So glad we haven't had many grrrrs lately. Must mean the heat is if off and our limbs are a wee bit happy. I know I am. No grrrs from me....well....except I really hate LE more than hot pokers stuck in my eyeballs. Yikes that is bad.......hum...I will have to rethink that one.0 -
"I really hate LE more than hot pokers stuck in my eyeballs"
yiiiikes Hugz.... LOL ....lets hope that one doesnt get put to the test!!!0 -
Yep, me too although I can't imagine hot pokers in my eyeballs. Unfortunately, I CAN imagine LE.0 -
So, my LE isn't so bad - mild in my upper arm. So what happens? I now have cording in my at risk arm. NO nodes taken but prophy mx on that side. Onc checked it (I'm Stage IV, you'd best believe I wanted to confirm that it's "just" cording!) and suggested fingers-up-the-wall exercise for stretching. He means well but he's not a PT. Since I don't have any problems with range of motion on that arm, the nicest word I can think of for that suggestion is "inadequate". Fortunately, my yoga teacher gave me some suggestions for stretches and when I saw the LE PT she gave me some more.
I really don't want to develop LE in that arm. I mean, I really really don't want to. Or to put it another way, I really really really don't want to.
Grumblegrumblegrumble.
Leah0 -
Hugs4u -
I have one long consistent grrrrrrrrrrrrrrrrrrrr. I'm looking at my puffy hand right now, and would like to head out with the dog, but know that I have to put on the brakes on, and do my stupid LE massage or I will pay for it later. Oh - and have to wash out my glove. Grrr.0
