GRRRRRRRRR I HATE LE..........
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I'm so sad. My left hand is also swollen so have to have my wedding ring cut off! I can't get it off and my LE therapist thinks it's causing increased swelling in that finger.
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I'm glad to see this in writing--Ohhh it's such a pain in the a$$-that, probably the only place I don't have it--I did the therapy and excercises and wear al the sleves and hand thinggies and leg thingies. and it hurts most of the time--Then u have the bone pain from SE frommeds--so let's all excercise--Some days i can hardly walk--so it's no fun--I know--and it seems like no one elsr gets it???? Unless u have it. And why some women have only a few nodes infected--why would u get it? There's no reason (to me) At least I had 40 nodes out so I can understand it (not like it) I really don't talk about this much but thank u for letting me. And sometimes I hurt so bad my meds don't hep me rest properly so I don't sleep well. OK I vented it out LOL Maybe it will magically disappear--poooof-nope it didn't work TY TY TY.
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Yesterday I was the bug
Lets hope today we are the windshield. I like that expression Kira. Is your pinkie ok?LE wears me down.
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Another "bug" here too. And I agree, the early heat wave in northeast is delightful on the one hand, but horrible for the LE. Gggrrrrrr.....I'm going to really miss winter long sleeves and sweaters. So much easier to hide under clothes.
Kate33, so sorry about the wedding rings. I'm sad for you too. I haven't been able to wear mine for months and I finally just put them away. It stinks.
Kira, hoping pinkie is better....here's to a windshield day for all of us.0 -
olearca~oh I hear you about the long sleeves in winter. They help to avoid those irritating questions.
Edit to add about rings~if you have one affected side, switch hands. That's what I did. I think some ladies wear them on a chain around their neck.
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hai,
maybe i am a little out of place on this forum (since my english is not good) and i didn't have cancer. I am 28, ten years ago diagnosed with primary lymphedema at both legs. At the beginning I thought it was horrible, not being able to wear nice shoes in the summer and somethimes to wear these awfull socks. I tried to hide it. Five months ago I had an accident. I fell hard on one leg... it started swelling, now i go 3 times a week to the kinesist, were tapes, socks,... go swimming, lost weight , stopped anticonceptiva, everything... and i start to realise it will never go away. summer is coming, people are happy, and I am just thinking that i wont be able to wear a dress anymore. That it will be hot and i have to wear this sock every day... And nobody understands what I have. Some people that are informed, ask me if i had cancer. I understand you people very well, sometimes i am afraid of the future (what will happed if i am pregnant, will my chilldren have this too - cus mine is genetic). Nobody is able to answer these questions. And also i am afraid of getting cancer, cus my risk is very high i think to develop it at another place. But.... apart from this risk, a good surgeon said that i should consider doing the lymph node transfer... It just puts me at a very difficult question... am i going to take this risk or not. It is very strange, allthough doctors say that they perform this surgery more often (still at experimental stage though), i am not able to find anybody who did this. It makes me desperate. So if anybody here knows somebody, please tell me. The hard part is that there are not many people with primary LE, so they can't really predict what will happen; some say i have a better chance, some say the opposit... Good luck and lot of respect to everybody!
I wrote a letter to our Dutch television company, saying that i never saw any reportage about this disease, allthough 12O million people wordlwide suffer from this. I think they have a very big repsonsibillity in this, neglecting people in the news make people feel like they are a freak, that they are alone... BUT THEY ARE NOT..IT TAKES TIME TO RAISE AWARENESS but i do my best. I feel bad, but i dont feel like a freak... i am more then these two legs!!!
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kharimata~first of all, your english is very good. Secondly, there are a few ladies on these boards who will chime in with some good advice for you. You aren't the first person to come here with primary LE. I can't imagine how difficult this must be for you to deal with. Hugs.
Edit to add~while you are waiting for replies go to the upper right corner and click on 'Search'. From there under 'Keywords' type in primary lymphedema. If you want to narrow the search type in under 'Member Name', Binney4.
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Well darnit! Today I'm a bug again. I took my dog for a walk. It's nice and cool, a lovely morning to be out. AND she spooked at heaven only knows what, bumped into my leg and down I went on my affected side, hitting my elbow. I guess I'll be wrapping for a few days. Thankfully it is cool and I had a jacket and mitts on which likely helped a little. At least I didn't skin anything or wreck a sleeve. GRRRRRRRRR I HATE LE!0
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Oh Sharon! Why do we always hit the bad side????
I broke that hand when I fell last fall....
I was talking to a director of a LE school about what exercise he'd recommend for me, and he said, "bike riding as long as you don't fall....."
I said, I've already fallen....
I haven't worn my wedding rings since 2008. I went with my DH to buy a slim band in a bigger size, but just can't seem to wear it. I think I should have the band (he made it in dental school) and the engagement ring (his great grandmother's) resized for my right hand
I'll see if I can find a clip of the song.
Kira
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Isn't there a type of wedding ring that has an adjustable part of the band, meant for people with arthritis?
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Carol, I think there is--my issue is gloves--only a flat band would fit, and the fact that my finger can swell--although that one swells the least.
My DH was in dental school, and made a cast of my finger and made the band, and it was always a bit snug.
When I went to the jewelers to get a new one, she thought the old one fit fine, and at times it does.
I've gotten to the point where I can't tolerate anything on my left hand--so maybe, since I do kind of miss my engagement ring and wedding band, I should consider re-sizing them as my right--non-dominant--hand was always larger in the fingers.
Kira
oh, the Mary Chapin Carpenter lyrics from "the bug"
Sometimes you're the windshield
Sometimes you're the bug
Sometimes it all comes together baby
Sometimes you're just a fool in love
Sometimes you're the Louisville Slugger
Sometimes you're the ball
Sometimes it all comes together
Sometimes you're gonna lose it all0 -
Awww, Kira--your husband MADE your wedding band? And now you can't wear it...off all the sacrifices made to accommodate or work around LE issues, that one's gotta be pretty near the top of the heartbreak list.
The glove issue never dawned on me; I'm in a gauntlet. It's very humbling to realize how many more of life's subtractions you and others have to put up with that I haven't had to deal with. I'm in an airplane now and was just feeling peevish because the pinky end of the gauntlet makes me miss-type a lot, and bending my elbow makes the sleeve irritate a bit. But then, I'm only in this get-up for flights and weight lifting, mostly. My issues are not so peeve-worthy when I think of the bigger picture.
I want you to be the slugger today.
Carol
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Aw, Kate, that stinks about your wedding band. I hope those of you who feel like the bug today are the windshield tomorrow. It is raining here today, and I can definitely feel the change in weather.
None of my rings fit on either of my hands after my bilateral mast, even before I developed LE on right side of trunk. Rings on right hand always felt "funny" after truncal LE so I stopped wearing on that side. My simple engagement ring and wedding band haven't been on my left hand since 2008. We were going to resize them last spring, but my husband suggested I wait until after my deconstruction surgery, just in case I developed swelling in left side. Ouch! Gee, thanks, hon. Had to admit he was right and didn't have resized. Plan to do later this year. I can't understand why ALL my fingers are bigger since surgery. I did go through menopause and didn't exercise much after recon started because of the pain, so maybe my fingers are just fatter even though I've only gained 3-4 lbs? I am waiting to resize until I have been exercising longer, just to see if it makes any difference. In the meantime, I have been wearing silver rings I used to wear on middle finger on ring finger. I also bought myself a small silver ring to stand in for my wedding band for now. If my LE were in left hand, I definitely would switch rings to right hand. I would rather enjoy wearing than worry they could possibly trap fluid even if that finger isn't currently involved. Same thing with watch.0 -
This discussion is making me tear up. Some things you just should never have to concede to this stupid condition. No watch--crappy inconvenience. No wedding and engagement rings? That would crumble a corner right off my heart. Kira, Tina and I'll bet too many others--I hate that this is part of your LE reality.
I would love to have this perspective of 'life with LE' on my LE story website, if anyone has the energy to go there, register as a user and explain how you feel about not being able to wear the wedding rings. I have a few stories there, not enough yet, but already I've been able to direct some MDs to the site for a little window into what it means when LE invades a person's life. I'm making a case with some folks for early patient education at the time of BC diagnosis, to up the odds of both precautions to help prevent it and early diagnosis/treatment for a better outcome. If interested: www.lymphedemaspeaks.com.
Carol
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Kate, last night I bumped an old thread called "Tight Wedding Ring Solutions" for you, but I see by this morning it's moved pretty far down the list again. Look down a way and hopefully you'll get some ideas for removing the ring or re-making it so you can still wear it.
Carol, you're right -- sometimes it's these "small" things that are so hard to take -- like chopping off the sleeve of a nightgown so you can use it when your arm is wrapped.
Kharimata, welcome! Of course you're most welcome here! The lymphedema treatment movement really started in the United States when Saskia Thiadens came here from Holland and opened a lymphedema clinic, then founded the National Lymphedema Network. So we owe A LOT to the Dutch for helping us to connect with proper lymphedema treatment. In case you haven't found it yet, their website is here:
http://www.lymphnet.orgThe Lymphedema People website has lots of information on primary lymphedema:
http://www.LymphedemaPeople.comAnd the Advocates for Lymphedema discussion group on Yahoo has lots of members who have primary lymphedema. They're here:
http://health.groups.yahoo.com/group/AdvocatesforLymphedema/I love it that you're tackling the radio stations! You're so right -- a condition that affects this many people is something they should be helping with. I hope you get a response, or if not then keep on them. You might contact the newspaper too and talk to their Health editor. If they would interview you they could learn a lot and help raise awareness.
As for the node transfer surgery, there is no solid research yet about either outcomes or safety. The surgery is most often being done on women who have had breast cancer, so this surgery with primary lymphedema is even MORE experimental than it is for those of us with cancer. In the meantime, are you able to control the swelling with wrapping at night or compression hose? Do you do self-Manual Lymph Drainage massage?
Lymphedema is just a WHOLE lot of work, and having no awareness about it from others (or even from our doctors!) makes it so much harder. Brava to you for reaching out to educate the public!
Keep us posted on what you discover.Be well!
Binney0 -
Seeking advice from all my expert sistas! I am leaving on a jet plane (sorry, had to sing it!!) on Thurs...I have never been diag with lymphedema, have gone to pt trained in it...she did have me get a jovi sleeve to wear on the two hour plane ride (also suggested long car rides) my question is this....should I be wearing other things for prevention such as a compression garment for my trunk? She said I def did not need a glove...your opinions?
Thanks in advance, hope you are all well.
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Opinion? You definitely do need a glove, or at least a gauntlet.
Since the time is short before your trip ("by the time I get to Phoenix...." sorry, but you inspired me
) you can probably make do with an Isotoner therapeutic glove, which you can get locally or on-line.Here's a short article about the importance of hand protection when you're wearing a sleeve, from one of the leading LE researchers in the U.S. (you might want to share it with your therapist too):
http://lymphedivas.com/lymphedema/gauntletandsleeve/And on the other hand (no pun intended
), I personally developed lymphedema in my hand while flying with a sleeve on for prevention. It was not fun to get to my destination with no hand protection and no therapist close by, and know that I then had to fly home again with my fat hand.
I made a fist and sat on it all the way home, which didn't actually help much and sure was a bummer experience, so maybe I'm a little biased about this subject!
Have a wonderful trip, msjag, and not a "swell" one! Please let us know how it goes. Be well,
Binney0 -
Bonney, interesting article about glove/ gauntlet. I have Truncal LE under lumpectomy-side armpit and incision area. Recently discovered a small chord under that breast. Therapist was amazed I found it and has worked hard to break it up. I had only 3 nodes removed, all negative, with clear margins. I was told to wear a sleeve for flying and to consider a a compression cami and/ or bra. I've been wearing "regular cams for several monthscascthey are more comfortable with the LE. I have a Bali, Jockey, and another I can't remember the name of. Got in a size smaller to feel snug. The one I just got from the prosthetic company I am not impressed with-other than insurance will pay for it! Don't know if I will keep. It doesn't feel like it compresses anything! Just a shiny cami with pockets for padding that I don't need and the shelf bra built in.
I flew to Arizona Thursday with the sleeve and got along fine. It is about 80 degrees and my hands/fingers seem puffy but figured it was from heat and maybe I need more water. Could it be LE ? I don't notice veins or tendons being more pronounced. I guess I should try to be more in the shade as well.0 -
I went to the jeweler today and they cut off my wedding ring. The lady was very sweet as I started bawling like a baby. I think it was just so symbolic of so many losses because of BC and now LE. It definitely needed to come off, though. It's been almost 5 hours and you can still see a pretty deep indentation on my finger.
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Kate, that absolutely stinks!
To quote Binney: "Have I told you that I hate LE?"
Big hugs.
Kristy: how is the hand? Stay hydrated and keep it up when possible.
Kira
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Kate, I'm in tears just thinking about what it would feel like to be in your place. My husband has been such a rock, and a very loving one at that, through all that has brought me here, I'll read between the lines and guess that you're feeling similar thoughts. You did what you need to do, and my gosh that was painful, but I guess one way to look at it is this: The amount of sadness and hurt of having to remove that ring is a measure of how lucky you are to have the guy that the ring ties you to. Your sadness is a way to take stock of your blessing. Do you see what I mean?
Feeling for you here, very deeply--
Carol
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Kate, so sorry to hear about your ring. I would be devastated. Maybe you can create a new design and think of it as a new beginning or something?
Kira, my husband is a dentist. That would be so cool if he made me a ring, but I don't think he's that creative-lol!
My hands are better, so i think my body is just not used to the heat. Makes me nervous for summer, however. Worried I won't be able to be outside as much as I like . I missed a lot last summer with both chemo and fads. Hardly went out and did so little gardening . Really had to be careful about overheating, which was never a problem before. oh the lingering joys of stupid BC.0 -
i've had my wedding ring resized 3 times so far.. from size six, to now, and eight.. im going up another 1/2 and wearing a gaurd with it, next.. its a claddaguah; so, its very large, no engaement ring... when i don't have it on, like now, i just miss it so much!!
i've never said a word to anyone, though , but Mur, dh.. im so glad you all suffer with this darned problem, too.. keeping on trying, though.. my hands are the worst part of my le: well, and the 'dog ears.. i don't have rings for there, thank goodness. just wrapping hahahaha3jays
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Kate, I'm so sorry about your ring having to be cut. Your finger will appreciate it even though your heart doesn't. Hugs.
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Kate, gentle hugs and something soothingly chocolate,
Binney
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Kristy, when my husband was in dental school, back in the 1980's, they did the "lost wax" method to make their own crowns and stuff, so he made our rings.
His was cut off after a basketball accident, and you don't see him mourning it, as it sits in the jewelry box.....I did make him give up basketball due to broken fingers not being conducive to work, so he did mourn something...
If your hand gets swollen, you might want to look into a glove to have for the future, for times you are active or it acts up.
Kira
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Thanks everyone for the empathy. I'm feeling much better today and my finger definitely is (though you can still see an indentation almost 24 hours later). carol- I liked what you wrote about the amount of sadness and hurt being a measure of how lucky I am to have my DH. What a great way of looking at it. (You are a glass half full kind of girl, aren't you?) It's been a trying year (my wonderful DH was dx with Parkinson's 2 days before my last recon surgery) but we're so grateful we have each other. I'm also grateful for all of you. Not sure I would have known about, or recognized the symptoms of LE, early enough without all of you posting and sharing so thank you for that.
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Kate~even without LE, a ring worn for years would leave a bit of an indent for some time.
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Kate, I am a glass-half-full person, but truly my glass emptied a bit lower than half when I read your post. We all cherish the support we get from loved ones and close friends. It hurts when a tangible way of honoring that support has to be put aside for LE. I don't have it in my hands (not sure I dare type that, actually, lest it happen), but I can sure channel the pain of putting that ring away. And having to have it actually cut off is a pretty darn rude way to have to do that! Kate, you are so right that the support here is amazing. It's a warm, safe place to get propped up when needed, celebrate when there's good news, and find accurate, actionable information when you need it.
So sorry to hear about your DH's Parkinsons. You both must be stepping up as rocks of support for each other. Is there a good social media forum like this one for folks with Parkinsons?
Carol
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Kate, ((((HUGS))))), Carol wrote so beautifully (as she does so often) about how we can all muster up empathy thinking about how LE has robbed you of the simple act of wearing a wedding ring. Not only did you have to "take it off" (as many of us have done), but the act of cutting seems so cruel. I am so truly sorry and wish I could be there to give you a big fat-arm and swollen trunk hug!! How is your husband doing?
Kira, your husband making your band is so sweet. I am getting teary reading about everyone and their wedding rings/bands. This LE just plain sucks!!
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