GRRRRRRRRR I HATE LE..........
Comments
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Purple32 - I think my therapist meant the swelling could go away, not the LE, just like carol57 is explaining. This is all new for me, I just know it hurts (arm, back, and now the chest from stretching the arm). I just need to be positive and follow all the recommendations at the SUSO site.
I'm in Europe, not in the US, but I was very lucky to find a therapist specialized in lymphedema. She's specialized in some weird sleeves (she called them multy-layered something...? bands...?) but she said it's to soon to know if I need them.
GmaFoley - that's what I was told, only a few nodes can cause lymphedema. Radiation on the nodes must be painful
Sorry that you had to go through all that pain.Thank you carol57, it's "only" a half-marathon, it'll be 4 cycles, I'll be done in March.
Take care friends
See you soon!0 -
"Purple32 - I think my therapist meant the swelling could go away, not the LE, just like carol57 is explaining."
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OK SophiaGlad that was clarified because sometimes when writing by text it can be confusing.
Now pack on your chemo, and go get that cancer then ! :>)0 -
I'm kicking cancer's a$$ tomorrow
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Sophia - I'd like to jump in with an addition to Carol57's advice to ask your BS - not all PT's and OT's are certified LE therapists, and they don't have to be to say that they deal with LE (at least in the US), so be sure to check the certification of any LE therapist you are referred to. My first referral was to an OT that said she knew all about LE and treated it - let me just say B__L Sh__ She had no clue what she was talking about, if I had followed her advice I would have been lucky if I didn't make my issues worse - besides that she told me how devastating it was that I had breast cancer and how she would just curl up in bed and cry for weeks on end if that ever happened to her - now that's real helpful - NOT!!!! Anyway, just a warning to any of you, make sure that your LE therapist is TRULY certified in LE Therapy!!!!!!!!!!!!!11
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LindaKR - I had problems with some health care providers but fortunately not my PT. She's certified. She's younger than me (I'm 34) and that caused me some apprehension but now I know she's experienced and very entusiastic about her job. She immediately gave me usefull advice and gave me reading material to take home. She was also a huge support on one thing, I was having a lot of trouble taking my bandadges off, looking at my scar, putting cold cream, putting my clothes on top of it (mastectomy with no recon, no TE, looks like a shark bite and the skin was black - disgusting). She was so natural when dealing with the scar that eventually I gained courage to start looking and touching it myself.
I'm sorry that happened to you, some people have no clue. A friend recommended me a psychiatrist when I was dx and this "Dr." compared me to female dogs who need to have at least one litter to avoid diseases. Of course I never went back
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Oh my goodness Sophia, that psych sounds crazy to me - YIKES!!! My scar was kind of scary at first too, I was worried that it wouldn't heal (so was my BS) but it did, and now it looks pretty good, kind of tight though!
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Thanks for the advice on Lebed Binney. I'll have to check it out!
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Holy crap!!! That is ridiculous. What about people like me who couldn't have a "litter" despite really wanting one. Also I started my periods at 9 years and 8 months. I didn't have any control over those risk factors.
I have had a lot of experience with psych docs and they are all a bit nuts IMHO.
Hang tough, Sheryl
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Well over the holidays I got a bit slack with my date with James and go figure.....My swelling in trunk is worse.
GRRRRR.
...well at least I know that Lebeds really does work, I did it last night and have improved already Doesn't sting anymore. Got the swell spot inserted thruout day also. Will see if that takes care of the whole mess.Oh and by the way, I was thinking that I was selfish hoarding James all to myself for my evening dates. Seeing that it is the giving time of the year..... I pronounce.... you all to have free access to my dear man, James. Yes, I feel better now that I am sharing
You knew I gotta hand it to James, He's doing pretty good for his age.
Not only is he my main man, he's my mascot!
GO JAMES. GO!
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Lebeds really does work, I did it last night and have improved already
Great to know it's working for you hugz.I hate to sound mean, but really, that's what you get for hoarding Jimmy for so long!
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Purple, Too funny
Sophiafred, Just be careful with your stretching, you don't want to tax your surgery area. Sounds like you are LE negative! Good, but do be aware for years to come. Hoping chemo is easy on you and you have enough energy to stop by and say how it went. More important... pamper yourself and when anxiety hits, those belly breaths come in handy.
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Serious note here - sorry - you all did give me a good smile...
I had a rough day on my feet at work today - put my slippers on and didn't ever take my socks off when I got home... my top of my foot started burning (felt like a rug burn)- I just now took off my sock and the top of my foot is red and swollen... I only have upper quadrant LE - could it move down to the feet???? cellulitis??? it looks like one big welt on the top of my foot... come on - I don't want to add anything else to my list... enough is enough!!!
What should I do??? foot up??? Help :-(
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Put your foot up Gma! Do you have to work this weekend? If not - keep it elevated. I have had something similar happen when I've been on my feet a long time and the shoe was a little tight on the top. I don't think that LE could "move" that fast. Keep an eye on it and get some relaxation time in if you can. You've been through a lot lately. Oh - also, I had a rash/swelling/burning/stinging/hurting/hot to the touch happen in my arm pit recently (non-BC side) it turned out to be a yeast infection. Bought some cheap OTC anti-yeast/anti-fungal and it felt better and the redness and swelling went down almost immediately.
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Gma
You dont need a newbie like me presuming what may or may not be cellulitis, but in the meantime, take some tylenol and get off those feet and drink plenty of water.I think they could only help and not hurt. Watch the salt if you are INCR+ those fluids though.
A few hrs in the recliner might be in order.
Hopefully, someone more knowledgable will post.
(((HUGS)))
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With your history Gma, I'd be heading to emerg. ASAP. I hope it's nothing but it sounds a bit ominous. Hugs.
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Gma, I see on the exercise thread you mentioned having a fall. Did you injure your foot when you fell?
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GMA, how's the foot? Could it just be sore feet from shoes that got tight on you? I hope so. I hope you're able to take it easy the rest of the weekend.
Haven't been getting to the gym regularly with the holidays, but on my way now:). Will report back later.0 -
As always - getting out to exercise took a back seat during the holidays. Hmmm. Little Martha (LE arm) has been achy the last few days - just annoying, not painful. Gonna get back on track and do some Lededs today. I skipped MLD last night - could not stay awake. May even get on the treadmill I walk around all day.
Need to pace myself - doing housework and laundry so it's all about moderation......
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How are you doing this morning Gma?
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RE: Farrow gloves dassi said
" We should advocate for a change in policy. Can't say I would boycot them because they still make the best fabric around."
I could not agree more. Perhaps we could try to get MANY of the girls here to email and ask if they would consider standard refund or exchange policies. I will post on a few threads, AND I will personally shoot an email off right now asking for it.( OR 1 979 822 9120)
What do you say, gals ? Will you help us out ? There is power in numbers.
Perhaps some of you could write and say that you heard of the FARROW glove but also heard they do not have a standard refund or exchng policy so you dont want to chance them(?) Any takers ?
I/we appreciate the support!purple32
(SEE GLOVES and SLEEVES thread for more info)
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Let's hold off on the email campaign until we hear how Dassi makes out with Brightlife. We want to save our "firepower" for those companies and issues that really are resistant to our needs, yes?
Be well,
Binney0 -
Binney
I certainly respect your stance. My email to Farrow simply said that I believe my FITTER should return any glove that has an issue and if they wont then Farrow should consider each case on an individual basis.
I dont see where anyone should squash an email request ( even from many people ) because Farrow has been responsive to (?) They are NOT responsive according to their own brochures and offer absolutely no refunds. This is not good policy IMO, and not everyone can afford to just ' eat' the cost of a glove.
Additionally, I am hoping my copper glove comes in sized the same as the black, but if not, I would like to know I have some recourse since several people now have stated that the different colors seem to be sized differently.
While I am optimisticly hoping for the best, and I am not putting Farrow on notice OR boycotting them by any means, I have expressed to them a desire to be able to work together to help each individual when warranted- ESP in cases where fitters will NOT help ( like mine !) I would encourage others to do the same.
I'm not on a warpath- just advocating for myself and ALL of us.
I wish all of these places were as easy to deal with as Lymphedivas! We wouldnt be having this 'exchange' !
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Ladies, foot is ok after some well deserved up time on my recliner... This morning, I actually was dropped off by my DH at a friend's house.. I showed her the Sansone trial u-tube and the lebed u-tubes - we did 5 minutes of each this morning... I had my garb on and I was careful not to swing my arms, like my LE T suggested... I did ok, foot is ok and life is ok.... I just have to follow the orders not to do too much too soon... Should I stamp that on my forehead?
Thank you all for being here for me... BTW next week if I have time, I will be going an hour and a half north to a new fitter/medical supply place that says they have a compression cami that adjusts and it is only $86. Supposedly, they have ladies that only will wear it for their truncal LE... I will see.. They are also (for no extra charge) going to check my measurements to see if I have the correct sleeves on and see if that is why my left(good) upper arm isn't getting better.. Over the phone they seemed extremely helpful we shall see... Linda they are in Springfield, OR..
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Hey, good news Gma.
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Oh, whew! Gma, so glad to hear this!
And, hey! Can't wait for your report on the adjustable compression cami. Take pictures!
Hugs,
Binney0 -
Gma, glad to hear your tootsie is better, as a long time person with tootsie issues, yeap rest is good!
I do believe if need be, the office supply stores will custom a stamp for you♥
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Gma - glad you got some rest. I have a heck of a time pacing myself, like I said earlier I over did the Lebeds and it was two weeks before I could even attempt it again. I think a tattoo on the forhead, both hands and painting the rules on the wall might help me out, but then again, I overdid today too with housecleaning, but at least I wore my sleeve, though I do have to double up on the pain pills tonight - someday I'll learn.
I went to Cynthia's in Eugene for my fittings, and I know they carry compression bras, but the last couple of times I wasn't very happy with the last fitting (Cynthia was great, but her partner - not so much), so went to a place in Salem called Ladies First Choice (my mom knows one of the owners) that place was fabulous for fitting bras and prosthesis, I saw Joanie. Let me know about the place in Springfield, that would be closer. It's a pain to go to Portland for the compression sleeves and Salem for the bras, cami's and foobs! But I hate it when they get it wrong
When I was having more trouble with the truncal edema I got a Amoena brand comression bra, hooks and zipper in front, shoulders adjust, and it worked well, and was really comfortable, helped with both swelling and pain - so good luck with yours. There's another brand, Belisse, but I think it's more expensive - I'd love to try it sometime though too, I have swelling in the axilla and would like a bra that comes up higher there than the Amoena does. Most of my truncal selling is just below the ribs and the compression bras come down and cover that area well.
So good luck Gma and keep me in the know since we're in the same area! Also would like the name of your LE-T in case mine is not available sometime when I need one.
I did get a nice walk in today in the sunshine (though it was cold out). And still loving my one piece, custom Juzo, even taking a walk and overdoing the housework, my swelling is less each day!!
Wishing you all a blessed New Year!
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Hey any one heard how Kane is doing?
FYI, I bought a Farrow glove and asked Brightlife if I could keep it and order the next size up and then send one back. They agreed. Love Brightlife.
KANE are you there? I hope you are up to posing a update.
Kane was in treatment this fall, she is such a trouper.
The black Farrow is tighter. Any clothing in black is tighter due to the dying process. Keep that in mind when ordering garments.
I also got a extra handpiece compression to go over the Farrow, I think it was 45 dollars. haven't tried it over the Farrow but it will give more compression if needed.0 -
Had an encouraging experience tonight and wanted to share with you.
I dressed in my finest tonight to go to a musical...red/black dress, black short tuxedo jacket with 3/4 length sleeves, black tights, black booties... Beige sleeves, well worn beige compression gloves. I ate a late dinner at hotel where I'm staying and my waiter asked about my gloves and sleeves, "Those are really cool." Me: "Really? Hmmm. Thanks." It's possible he just wanted a good tip...but the sleeves/gloves totally didn't go with the outfit...I honestly don't think about it much anymore...I know I used to be self conscious and I know other ladies have posted they feel really self conscious...but this guy seemed to think they were cool. Even ugly, plain beige. Was my exclamation point to a fun evening. 0 -
Dawne, I love your story! I wonder if it has to do with the fact you weren't thinking about it at the time? Maybe it's that missing element of self-confidence that gives our gloves/sleeves a more purposeful look. Like we're style leaders instead of being forced into it.
Beautiful!
Binney0
