GRRRRRRRRR I HATE LE..........
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lvtwoqlt - if you have trouble putting the sleeve on my OT/CLT showed me how to use rubber coated work gloves to even it out, it works great, and I can do it myself, it is easier if someone helping me uses both the gloves, and you don't damage the sleeves. They are inexpensive and easy to find. They look like this, you just use the flat of your hand/s to even out the sleeve and move it up your arm.
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great picture of them,Linda. you can find them at Dollar store; or Dollar Tree, for a dollar, if you have either of them. i think thy're $4.00 at Home Depot, if you don't have them near you.. also, get a pair for gardenin, but full rubber, no cloth. the ants, etc. can still bite with the cloth ones.. we need to NOT get bit while gardening. a few ladies i know here, have gotten infections from ants in the garden.. thy're a little hot, but good for protection.. also, here in Fla, you can get psdemonius bacterial infections starting in the hand, with out them. it can be a deadly bacterial infection, so we need to be careful!!! the joys of LE.{{{{{{{{sigh}}}}}}}}}}}}}}3jays
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Just had to stop in before this day is done...
I ve been behind in reading all of your writings... and have been reading and posting over the past year.
Found out today that i officially have Stage 1-2 Truncal LE. My right arm was 17% larger than my right. My pecs felt like rocks/ my armpits like tennis balls and my ribcage has me jumping out of my skin and tough to lie down on. I was just At Risk prior. But 75% of my summer i have had various degrees of this going on. This is my first true summer post op a year later.
and
that I have incisional scarring thats severe. 2 bumps that are not cords.
Then my LE/pt asks me if I have ever had a PET scan, doesn't recomend recon at this point...and seems to think I had Chemo....but I was lucky and did not.
and that I have entered the Land of wearing Compression all but for Sleep.,,and a mention.." are you alergic to any TAPE..",,,, thinking kineso sp?
Am headed towards a Compression Vest being created... and had to go get compression Under Armour... and will have to do the Jobst/glove thing if I wear the short sleeve one.
And getting my new Foobs/bras for the year are on hold as well. So I am flat and Commando Woman with Etheral Hooties....( the only way i can do it with any Sanity)
I was really assessed well by LE/pt....had a taste of my first MLD... and after crying hystericaly in yet another hopital parking lot afterwards shopping for 2 hours for compression gear I am bumming.
And there is not anywhere else I thought about comming tonite and saying Hey to you all. Because you are out there with me.
Kitty D write me sometime if you want.
Hugs to all
Feel better
xo
brazos
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Linda thanks for the idea to use rubber coated gardening gloves. I have been using a new pair of Playtex Living Gloves to put her sleeves on and I know that we can't get that brand big enough for my dad's hands. I will tell mom to try that when Dad starts to put the sleeve on.
Sheila
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Brazos--we've all been there. Shopping or getting compression garments can be so painful--paying a lot for something you NEVER wanted. I know Binney often needs a while to recover, and when I get a new glove, I'm glad but very sad as well.
You're getting treated, and it willl get better. It will. And we're here for you.
Being diagnosed with LE requires grieving. It does truly stink.
Kate: if I read your post right, your son is getting married?? (DS=dear son, right?) Congratulations! My older daughter got married three weeks after my initial surgery--very special day, and I hit the jackpot with an amazing son in law.
I'm so glad you found the new LE PT, and she's helping you and you and the glove are coming to terms.
Kerri: I feel like you've got to take it one step at a time--the steroids are bloating you, and will get out of your system, and you'll "shrink"--some sleeves have a wider range, and it's something to consider. Others only fit a narrow range of measurements (Like Jobst is just small/medium/large, while Juzo and Medi have at least 6 sizes.)
Linda: totally agree with Kate, your stories horrified me, and yet they're so common and so true.
We will get through this together.
Kira
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brazos, hugs. There's not much else to say but sure hope it gets better for you
kira, yes, a week from now my Son is getting married. I too have been very lucky in my Daughter in law to be. I'm really excited
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Kate, Mazel Tov on your son's upcoming wedding.
I've had a minor flare for a few days. Up until now I've been doing exercises plus MLD and wearing a sleeve & gauntlet during the day but didn't need compression at night. For the past few nights I've been wrapping and it seems to be helping. I'll be calling my LE PT tomorrow. I know I need new garments and I think I need a tx (or maybe a few) from her also. What I can't figure out is what triggered this. It's still hot here though not as hot as it was in the summer, when I was fine. Haven't done anything to stress my arm, haven't eaten differently (more salty food etc), just more swelling all of a sudden. The only thing I can think of is the garments so I hope getting new ones will help.
Leah
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Leah, that rots. The good/great news is that you're completely on top of it, and know how to wrap and control it. Let us know how you're doing. Oh, and happy new year--I once spent rosh hashanah in Israel, and it was a great holiday there. A lot of celebrating.
Kate: Let me second Leah's mazel tov, it's just so wonderful, and I'm sure you'll be a wonderful mother in law--lucky son and wife to be.
Now, I'm kind of hoping for grandkids, but it's none of my business, but still.....
Kira
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Thanks Leah and Kira. I am getting so excited.
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Kate, it is exciting!
I was diagnosed about 4 weeks before my daughter's wedding and rushed the surgery, because I wanted to be there, and for some reason, just couldn't let it be until afterwards.
And I was there, and it was wonderful and three plus years later, I feel so blessed to have our SIL be a part of the family.
Mother of the groom! Very exciting stuff.
Kira
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Well I've had my lymphediva sleeves and gauntlets for 4 days now, I love them, I'm more compliant, my arm is behaving better, they are so comfortable that I forget I have it on. Also, I've now been asked 6 times where I got my tattoo, my daughter posted it on her FB, and her friends now think she has a really cool mom. I think that I'm only going to get these in the future. The kind I bought before was a custom made Elvarex by Jobst (I think), it's not very comfortable, I wonder if she measured me wrong, because it works it's way down my arm and makes my hand swell more when I have it on, and the gauntlet got a run in it the first time I wore it. Glad the insurance paid for it and not me.
Hope you are all having a great Sunday.
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brazo's seems we had the same kind of week. (((((HUGS)))))
I am still swollen and I do know what set it off. BACON the occasional piece is okay but never eat what nobody else eats. I ate my DD's because she decided she didn't want it. Bacon is one of my favorite foods that I don't eat very often. I thought is was down some but by 7 tonight the bra felt like it was cutting me in two.
I also know that being on the road doesn't help. My mom fell last week and broke a bone in her foot. I wasn't planning to go back but she fell again and my nephew who lives with her works on weekends felt she didn't need to be alone. So yeah my weekends or booked on the road till we get her moving again. It also didn't help that yesterday we sat thinking it is hot and humid in her. I thought I had cut the AC on but I didn't. lol I cut the fan on..it's what I get for not wearing my glasses around my neck.
I feel better...I think a good cry is what we need sometimes. Going to work hard on it this week and I plan on going to weight watchers too. I know my weight is against me and I have to do something about it.
I also out of frustration ordered me a new foam foob. What a shock that I got it two days later. It made my day getting home and finding it had arrived. Foam is not made to last more than a year. Have a great day!
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KittyDog - isn't funny the things we get excited about - my new LE sleeves and your new foob. Let me know how it works. I've been thinking of trying a foam one, because even the light weight prosthesis makes my bra strap dig in to my shoulder.
I hope you are having a better day. Said a prayer for your mom to heal fast..
Linda
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Can I tell you how much I love this thread? I HATE LE and I am still consumed and obsessed with the fact that I have LE, but coming and lurking and reading here - even the same posts over and over just makes me feel a little less alone. So happy to hear about weddings and good, happy things. Congrats, Kate.
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Thanks everyone.
I'm furious this morning. Now that the new LE therapist has made so much progress it is evident that I have had significant muscle atrophy on my LE side and the LE was masking how bad it was. We think probably some tendency towards thoracic outlet and when I swell the nerves get impinged upon. As she mentioned, all the weight training in the world doens't work when the nerve isn't getting to the muscle. I can not tell you how many times my complaints of worsening pain and LE were blown off becuse "it doesn't look that much bigger than the other side to me." It wasn't that much bigger, it was actually that much smaller, and the size difference was all masked by bad LE. Right now I could cheerfully put that LE arm at risk by punching every nurse and doctor who said that to me.
There, thanks for letting me get that off my chest. On to more cheerful things like weddings!
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I just can't let this thread drift down.
Olearca--LE, it's a WHOLE lot more than just swelling, and it does loam large in our lifes. Amazing how I can peacefully coexist with it, with just minimal resentment, and then just run out of tolerance.
It is good to hear of celebrations and good things--to make us realize that we have LE, and the nasty thing needs to find its proper place in our lives.
Kira
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Kira....................I am so fed up with all the LE crap, I just don't care anymore..............its never going away......................its learning to live with it.....................and I have had it with the whole thing........................still no custom sleeve................a Juzo which works ok, but somehow feel if I needed a "custom" at one point, why is this "ready-made" ok now.
hate exercising the arm...........hate the sleeve.....................right now hate LE.................and everything that goes with it...................I have run out of tolerance too...................I'm tired of the $40.00 co-pay everytime I go for therapy, which is 2 times a week........................sick of the whole cancer "bullshit", and sick of being sung Happy Birthday to by Ricky Martin, and all the other freaks who think that makes us feel better.........................ok I'm gonna go find the Vodka........
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oohh Ducky, I hate those Happy freakin Birthday commercials too
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Kmmd - my dh had thoracic outlet syndrome - another hidden disease like LE that's too often mis-diagnosed and mis-treated to the point where the patient ends up with permanent damage. He had venous TOS, not neurogenic - it turned out that two of his ribs were compressing and fusing, squeezing out a vein. His first symptom was when he woke up one morning and his arm was swollen, ice cold, and blue because the vein was so blocked that blood couldn't get back out of the arm.
He futzed around with a local vascular surgeon for months who mis-diagnosed him completely. I fussed at him enough and finally dragged him up to Hopkins - the chief of surgery there is a recognized TOS expert.He had the rib resection surgery in 2009 today is absolutely fine. Fortunately he got away from the local doctor before he had permanent damage to the arm, and more importantly, before a clot broke loose and got into his lungs!
As with LE, the secret to TOS is getting someone who knows what they're doing. Too many vascular surgeons and other doctors don't know how to recognize TOS. Here's a good website about TOS that we found invaluable - it's like stepup-speakout in that it's by TOS patients for TOS patients: http://www.atosa.org/ From what I understand, neurogenic TOS can often be successfully treated without surgery by a competent TOS doctor and proper physical therapy. If you're at all near Baltimore, I'd highly suggest you get a consult with Dr. Julie Freischlag up there - TOS patients come from all over the world to see her.
Ducky - hang in there - how about a nice cosmo with that vodka? Light on the cranberry juice, of course!
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Natsfan........................yum...............great suggestion...................and girlfriend.............you have those Maryland Blue Claws in your backyard.............................oh the wonderful days of crabbing in the waters of Rockhall, MD........................and bringing home those bushels of crabs caught from our Trol-line.......................those days are gone. I remember 8 inch crabs from point to point..........................gonna make that Cosmo now, and reminise about my "crab days".................hugs.
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Thank you NatsFan
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Ah, Ducky, it looks like; you're gone from "crab days" to "crabby days".
At least you have us (and this thread).
Leah
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HAHA.............Leah, your right............and spoken so well...........it gave me a good laugh...............thanks girlfriend................
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Hi Ladies!
I'm new to this thread and new to this whole thing, had my bmx with te's on 8/12 and still in expansion mode. 1 week ago, or 4 weeks postop, I had my first PT appointment with an LE specialist because my bc side is a little more swollen, has much less mobility and just feels weird - thick and nervy. She massaged me and made everything feel 1000% better and immediately scheduled a few more appointments and ordered a sleeve (I'm flying next week). Her diagnosis was that it could very well be TE in the beginning stages and she wanted to treat it as such to get ahead of the game.
I've been so focused learning about bc, surgeries and treatments that I'm just now starting to get a grip on this new twist and whether or not what I'm feeling is LE. I'd really appreciate any thoughts from the group - is this the way it started for you? Does this sound familiar or what my surgeons said was probably normal healing? Thanks in advance for any help you can offer.
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Most surgeons have no idea about LE.................so don't listen to their "bullshit"...............I had to bring my LE to the attention of my Dr.'s, and I had the best.......................stay with the specialist................they know so much more....................catching it early is very, very, important..............hang in there, and this is the one time I would suggest "not listening to your Dr. about "normal healing"..................
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rcox, more accurate to say probably that it could be all normal healing, especially since you're undergoing expansions, but, could also be beginning LE, it is too soon to tell and since you are going on a trip some massage, teaching, and a sleeve are good insurance to have since catching and treating it early is important. Treating symptoms like you're doing sounds like a very good idea.
Ducky, you're on a roll today, your rants are making me smile and feel better
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kmmd...............I am on a roll....................and it isn't even a full moon............and its only Tuesday.................
On an LE note.........I asked my Dr. early about LE.............he said the swelling was from the surgery...............went on to Rads, which was about 1 month after surgery, and only after 1 week I thought........something isn't right...........I told my RO about it, and said I thought it could be beginning stages of LE..................I had researched it fully before surgery....I think that scared me more then anything else..........thus the overkill on research.
Well my RO measured my both arms, and said ..........."yes you are right".........I want this checked out....................she sent me to a specialist, and sure enough that is what it was......................and the rest is LE history..................I won't get into all the "bullshit" I went through trying to get a custom sleeve that fit right..............still don't have one, and my LE person is at her wits end with the fitter.........we're gonna do a Juzo instead...............well end of that story..............Gee I have to find something else to rant about.............hahahahahhaa.........how about the fact that Philly is going to get more rain today................
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Wow Ducky--Do you have any vodka left? Your pen is loaded today!!! My glass was half empty this am but I went out to a local dam and walked across, then sat in the shade watching the water. Now it feels half full again. Unfortunately I cannot have the vodka as I am on a statin. Plus a new sleeve and glove arrived today and fits so much better after the weight loss. I love the cooler weather. If we ever have an LE get together I want you there!!! Becky
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Becky . ................I am as sober all the time as a Judge (maybe that isn't a good example)........don't drink, and have never drank.............well maybe a little Kahula, truth be told..................I too am on a Statin, plus BP meds, so I can't drink either...........although sometimes I do and then my kids scream at me..........................I'm just being funny when I say.............I have to find the Vodka.............honestly, I have every kind of booze known to man...............but never touch the stuff.
Believe it or not Vodka, was the one thing I hated.............or anything made with Vodka..........I'll say this much......................if I drank, 1/2 of the shit that gets on my nerves would probably not bother me........................maybe I should give up the Statin for booze.................I know people who drink like fish, smoke like a chimney, and Becky....................they are all 90, high 80's, and they have no problems at all.
I have a sister-in-law who loves to drink, and has been smoking since she was 15. she is now 70, and the only thing she has is a friggin "hump" on her back from Osteo..............go figure...........never goes to the Dr............. she does get a yearly mammogram, and her colonoscopy when she is due..........................she is skinny as a bean pole, takes no meds, and smokes1 pack a day, and that is only because her husband stops her when they are gone.
I'm telling you...................I think the shit they do preserves them..................oh well. another rant done for today...............I am really on a roll...............................giddy up.......Horsey.
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oh duckyb1, LOL! Thanks for the laughs!
On a serious note, what's this thoracic outlet syndrome? Kind of scares the crap out of me! Something else to worry about with LE? I'm going to read the link now. Thanks, natsfan!
Ducky ... I think I need another rant!
xo0
