GRRRRRRRRR I HATE LE..........
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3jjqays 0 -
coluldn't find our "swell " group..
kmmd.. i hope you find the PROPER tx for your DH..
just for an "update" if i wear the one set of full fingered gloces i have, and wrapping hand at night, im "holding" steady... when i see the thyroid specialist Oct 5th; then, itd' be the new fitter next.. im gonna try the Caresia glove you recommended for nightime, Kira. hope it helps. the swelling in my hands is the worst at night. makes sense. i've used it all day; of course; it has to be the d*** dominant hand, too..
ikcox; i'd treat it as if it IS LE ; its always good to get ahead of the little devils...hello to all my "swell " sisters. this isn't a club i really wanted to join, then again, did any of us??? 3jays
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2jaysmom--Love your message. All of the emotions we have on this LE journey. It does make us "crazy"! Becky
Ducky--Hope you have a better day. If not I am sure you will let us know. Looking forward to hearing from you.
Becky
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Thanks so much everyone! You've definitely made me feel better - love the rants duckyb1! My next appointment is Thursday, so we'll see how it goes.
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rcox, let us know how it goes--it often helps to have the NLN position paper on LE treatment to review with the therapist, as many of them have different approaches
Here's a link to the stepupspeakout page on treatment:
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
The NLN paper is linked on it, as is a handout from one center.
Do love the rants as well.
Kira
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To those on the group who observe Rosh Hashana....
L'Shana Tova -- may the upcoming year be sweet, but not swell. - KS10 -
Hi Ladies.........Not a rant, just a little "Oh sweet mother.........."did I just do that".................
I was at my grandsons football game on Saturday........we were tailgating after the game.......I had my compression sleeve on *not the custom, gave up on that puppie), just the gift from my LE person"
It was slipping down (which is a pain in the ass), and I grabbed it by the top, gave it a hard yank, slipped off the material, and punched myself in the friggin face, split my top and bottom lip open, and bled for about 20 minutes because of the aspirin I take everyday for the "heart shit".....................my son said "Mom, that is why we make sure you come every week, your the entertainment"..........................smart ass kid.......................
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Yep I also HATE IT, HATE IT, I wear my arm and hand garments all the time, I do the wraps, But all I have to do is light cleanning even walking with my arm down and bang!!! the watermelon arm and hand is their to bit me in the bum LOL So glad I could just say I HATE IT,
I would like to go to this birthday party and wear a dress( for once) I found one that will hide that I had a double mesectamey with no reconstuction, the dress covers that........
BUT The arm and hand I cant hide, it is a summer party no where to hide that) So yes I Hate IT
Thank you for your post so I could say this.................. HATE IT0 -
me too,trish all together now... LE SUX grrrrr.............3jays
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I am a MAN and I to haver LE. I'm currently seeing a LT but i am also seeing a Myofascia therapist as well. The myofascia therapy doesn't help with the LE but does help with the tightness etc....one trick I picked up from my LT was times when im more swollen is to bounce on those big exercise balls. She claims it helps to move the lymphatic fluid. I tend to agree at times it has helped. I do wear a compression sleave & glove which sucks and is constant reminder of this crappy disease that alot of us are dealt with. I also have times when my LE flares up bad that I get a softball sized fluid filled swelling right under my mastectomy inscision and that gets very painful.
I'm with you lady's cancer sucks, LE sucks, Chemo sucks, Radiation sucks, Hormone treatment sucks, it all sucks....but in the end at least alot of us are still here to bitch how it pisses us off.
Thanks for letting me share with you courages women. I found this thread on LE very refreshing.
Doug
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Doug, welcome!
Sorry for the reason you've joined us, but glad you found us. I too found gentle bouncing on an exercise ball helpful, and even kinda fun -- same effect as using a rebounder, no doubt. But I don't have room for it in my very busy household. Everybody kept stuffing it into corners or onto the furniture to get it out of the way, and my dog kept trying to figure out how to get it into his mouth. We need an exercise room, obviously! The Lebed exercise DVD takes up less space (I can store it in my computer), so that's my current "bouncing" of choice. It even comes with music!OUCH! on the chest swelling -- GRRRRRRRRRRRRR! Have you checked out the truncal LE page at StepUp-SpeakOut? There are compression garment ideas for both men and women at the bottom of the page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmIf you've tried any of them do share your experiences with us -- we learn so much from each other.
It IS refreshing to growl at LE, isn't it? Thanks again to Estepp for starting this thread! I'm hoping it'll turn out to be "the growl heard round the world"!
Be well!
Binney0 -
Hi Doug ................yea let's all growl at LE....................went today to my therapist, and she did LE massage and did say I was swollen a little in the breast area.................I hate this.............measured for a custom sleeve 2 times, and both times the fitte screwed up, so I'm using a Juzo that the LE person gave me.........................love the ball bouncing idea, I will have to get one, but like Binney I don't have the room for the big thing.
I actually have an Urban-Rebounder, but it is in my shed, since I downsized and have no room for many of my things, including a very expensive treadmill....................wish I still had the big house...............I probably could store the ball in a closet, or maybe on the other side of the bed that no one can see...................I live alone, so its only gonna annoy me.
Well welcome Doug, and come back often..............these ladies are wonderful, and full of good ideas, especially Binney, and Kira.................take care
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Just found out yesterday that I have LE. Hopefully it is caught early. Not sure what to expect. Have an appointment with a therapist next Thursday. At least this thread is great.
Grrrrrrrrrrrrrrrrrrrr.........................
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Kay...............early is important...........its not fun, but it is treatable..................Does it stink,,,,,,,,,,,,,,,,,oh yes it does...................just do what your told, and I mean "do what your told", and you will be ok.........................as ok goes...............................the ladies here, are full of great info, and could not have gotten through this LE crap without them................
The sad part is so many have no idea what LE is...................including Dr.'s......that is why we need this thread.,.,good luck.
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I am lucky that my doctors seem to be very aware of it. Going to an le therapist and then will be getting in a program for exercising with weights that my bs was using to study effects on lymphedema. I am actually looking forward to the weight program, not the wrapping or sleeves though.
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Aw, Kay, I'm so sorry
. Hang in there! Good news is, LE treatment is entirely non-invasive and there are no drugs to deal with either -- quite a nice switch from everything else you've been through this year!Here's information on LE treatment if you'd like to know what to expect.
Manual Lymph Drainage (MLD) massage:
http://www.stepup-speakout.org/manual_lymphatic_drainage_massage_lymphedema.htm
Wrapping:
http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm
Compression garments:
http://www.stepup-speakout.org/sleeves_gauntlets_for_lymphedema.htmTreatment also involves specific gentle exercises and careful skin care. It's a steep learning curve, so take you time. And please do tell us all how we can help.
It gets better, honest!
Gentle hugs,
Binney0 -
kay1963 - Ugh, so sorry! The whole thing, being diagnosed with LE, the sleeves, the gloves, the wrapping all of it really sucks!
I just want to encourage you, though ... I've been in a weight training program too and I've found that I actually LIKE wearing the gloves and sleeves ... it feels good to have them on and of course, you really NEED to have them on when you exercise. The weight training has really helped alleviate my pain and while I get frustrated because I have to go so slow (I did a lot of training prior to BC and LE), it has really helped my pain level. Just be sure to go slow and not push yourself too hard. xo
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Doug and Kay, sorry you had to join us. I'm a newbie at this but wow, the amount of info Kira and Binney provide has saved my sanity.
Can I ask - how does the bouncy ball work for LE? Is it to stimulate the lower extremity nodes? I have a ball and if it something that might work or be helpful, I just wanted to know it's purpose.
Catherine
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Thanks so much. It has already made me more comfortable with the whole idea of LE.
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I sit on a ball at work and do gentle bounces through out the day and I am pretty sure that has saved me from my LE getting out of control...
I am not the most compliant person when it comes to my LE and for a while there I really thought it was under control...I stopped wearing my sleeves and my compression vest unless I was cleaning/cooking or going to be in the AZ heat...guess I wanted an LE break...after about three weeks, I could feel a flare up starting in my chest and right arm...so back in the compression vest and right sleeve but I ignored my left arm since it was the prophy side and did not really bother me...my DD is in soccer so for the first game I put on both sleeves and noticed my left sleeve felt really tight...came home and measured...1 1/2 cm larger then the right...GRRRRRRRRRRRR
No more ignoring my LE...back to bilateral sleeves, right glove, that damn breast binder and MLD. I even had to brake out my night sleeve and I haven't need that for almost 6 months. I really HATE LE!
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welcome to all the newbies, yes, doug if you can get bc/ you also can get le. the good news is, you;ll have an easier time with the binders than some of these women who still have a breat, or recon. i stayed no recon; so its; easier to tx the truncal, too....3jays
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Welcome newbies.
I am feeling very GRRRRRRR this morning. The LE clinic called and cancelled my appointment for Monday. Asked if I could come in Tuesday...no I have an appointment already at that time. How about 4. I can't do afternoons I have a child. Can you come in Wed. at 2. What part of no I can not do afternoons. I have a child do you not understand. So I can't get in now till Oct. 12. GRRRRR Just made me feel grouchy today.
I will Say by the time I get in it may be down. Today it feels okay.
Have a great weekend everybody. Looking forward to it here. It is suppose to be in the 70's tomorrow. yeah.
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Question, my swelling is going down really nicely. What are they going to do if there is no swelling or just very minimal by the time I have my appointment with PT on Thursday? There is really not that much now even. I feel kind of silly going.
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Kay you still need to go and let them teach MLD just encase you swell again, you will know what to do.
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Kay, it's common for early-stage LE to come and go at first (hooray for early-stage!
) They'll know that, and they'll be able to help you KEEP it that way -- YES! By all means go. Nothing in the world silly about it. In fact, it's unusually wise. Brava!Keep us posted!
Binney0 -
kay1963 - I had the same thing happen to me! My fingers had swollen up like sausages but by the time my appt. day came ... they looked completely 'normal.' I felt stupid. But like Binney said that's how it goes with early stage LE. Over the weeks I saw my therapist she saw the fluctuation. GO!
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Hi Everyone
Reading on all of your posts of late...
I just finished week 2 of LE/PT going from At Risk to Stage 1-2 LE and TRUNCAL ..
I still have not landed. Was fitted for a compression vest with sleeves down my arms halfway. I am told I will not like it. Since I so rarely wear my Foobs as they also trigger Swells....decided to go with the flat one.. and wear Foobs over it should I need to. I am wearing the Under Armour Compression Heat Gear inside out...not to be wearing foobs or bra's now. Please spare me any more hot flash's!
and tried a LymphaDIVA with funky tattoos and cheetah pattern. So I am wearing that during the day and am set free at night.
I went downtown to a Jefferson hopital in the city for a few days... keeping a sick family memba company... with my sleeve and I had so many GAWKs....and being in Commando Mode as well, I decided I had better memorize the Serenity Prayer and get in touch with walking with Ethereal Hooties. I am still sore in my chest and my ribs are killin me....and whatever goes with the armpit fullness.?????? Travel seems to make things way worse....how do you eat with gloves? how do you hit the OUT HOUSE?
Not only did I miss my boobs bouncing I was at a total loss over this Le thang... and all the Boobs bouncing everywhere I turn.....
welcome Doug!
( KittyD.... HUGS)
Happy Freaking FRYDAY to all of youse...
and thank you all for being here and putting it all out that we ended up in this CRAP SHOOT!
Is it really just so random that 30% of us will get it? or do we need to know surgeons who have techniques to avoid this from happening?
brazos
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Kay, I just had an achey, heavy arm when I made an appointment to see if I had LE. I was so sure they would say no. I was Stage 1 and they could tell even though I could not. So try to keep the swelling down and go to appt. Becky
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Brazos, it soundls like a rough patch. there are new axillary swell spots from Jovipak, which may help with that "golf ball in the arm pit" swelling that happens.
How I eat with gloves--I take them off.
Travel is a royal pain: I'm in Chicago for a couple of days for a board meeting related to LE, and I had to wear the Solaris on the plane--bumped my pushy seat mate with it a couple of times--wrapped last night, and will go to the meeting on LE, armed with gloves. The other people here are smart LE professionals, but only one other person has LE, and "gets it".
It's been a rough week for some of us. Being in pain doesn't help either. I know how when I wear compression in public I feel that all eyes are on me.
Yesterday, they boarded the plane quickly, and the bathroom was miles away, and I thought "screw it" and put the solaris on in public. As someone else wrote here: so it looks like I'm training a police dog. Get over it.
Hang in there.
Kay, a good therapist knows that LE is "dynamic" and I just spoke to a researcher who claims that most LE diagnosis can be made by history--not fancy stuff like bioimpedance. Now, if insurance would get over that stupid 2 cm swelling "rule"
Kira
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Hooray! A report from the front lines, Kira! I love it -- hang the bioimpedance, which isn't supposed to be used for diagnosis anyway.
Too funny about "training a police dog"! When we travel anywhere by car I wear my Solaris sleeves, and we have my son's service dog with us, and it never occurred to me I might look like I was training attack dogs.
And since DS's dog is a big, goofy Golden-doodle who's easily mistaken for an over-sized stuffed toy, that must really make people wonder what I'm up to!
Have a great day today, Kira! Thanks for being there,
Binney0
