GRRRRRRRRR I HATE LE..........
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Yes, Ducky, thank you for trusting us with your really rough times. You're important to us!
Hugs, prayers,
Binney0 -
Nibbana,
Your post got overlooked:6 hours ago nibbana wrote:
Quick question.
The fist pumping trick doesn't seem to work for me in moving any fluid out of my hand. Am I the only one?
My glove makes a nice fuild collector. I take it off an look at my swollen hand.
Early on, my hand was much more stubborn than it is now: gloves just trapped fluid and fist pumping was only helpful for a while. I used a lot of gauze hand/finger wraps when I was at home to bring it down.
I would vote for "plan B": time to go back to your LE therapist and say "this isn't working"--maybe a new glove, maybe more wrapping, maybe seeing how you do without compression for a bit/or lighter compression--but this isn't okay, and a new approach is needed her, IMO.
Kira
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Thank you very much for the answer kira.
I agree, I need to do something different, this isn't working. I may be stuck with wrapping
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Kira - when you wrap your fingers do you also wrap your arm? My swelling is primarily in my fingers.
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Granny K I will pray that you do not have an infection. I'm so glad you have an appt tomorrow.
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(((((Ducky)))))
Granny, I hope things continue to improve for you.
Gentle hugs to all.
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yeah its me again.went to the BS 8am.grrrrrrr.not my best time of the day but she was wonderful as usual...she did a full examination and said its the LE.no infection cause everything went back to semi-normal.no trunk swelling at all just the breast and it went down a lot.She wants me to do nothing for 3 days.no exercising,stretching,wear a old comfortable bra and see the PT tomorrow.
now im off to see the obgyn.
thanks binney and everyone else that held my hand during this nightmare...and the prayers.
It looks like im gonna live.....so far!!!!!
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Great to hear Granny!!! Thanks for going in and checking.. I know that makes me feel better.
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Granny, I love good news!
But it does sound like your social calendar for the next couple days is not a whole lot of fun!
Hang in there!
Hugs,
Binney0 -
Need prayers and hugs today - I'm going back to my ONC today, after 6 months... He is going to give me the big talk on antiestrogen meds again - I tried all the AI's and had severe SE's - he took me off each one and told me I will see you in 6 months... mentioned tamoxifen but said just heal... that was before I found this was LE and another surgery... My husband doesn't want me to take them, but won't come with me to explain his reasoning... I really don't know what is going to happen today - no one is available to go with me
... I think whatever he says is best, I will tell him I will think about it and talk more with my DH about it...This sucks. 0 -
Gma--I am on tamoxifen and it has not been so bad. I have not been on any other. When I read up about all of them I was so glad my onc prescribed it. You might just want to try it.
Granny--Happy things turned out okay.
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Granny - I too am relieved you're ok.
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In light of what everybody else is going through this is nothing but it does bug me and it's my grrrrr for the day:
It's been way too long since I bought a pair of gloves and I'm still looking for a viable alternative to the sleeves with silicone dots....when I put it all in my cart from brightlife direct...it totals over $400. Ugh. Just makes me so angry! Grrrrrrrrrrr0 -
I was just getting ready for my ONC appt I looked down at my breast and I now know what orange peel skin is
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GMA.....Remember this is your show and you run it.....you know your own body.....for myself I decided before I went to the onc not to do Chemo or Rads.....was up in the air about tomax.....but then after that appointment I did not have to do anything....EXCEPT....have a total hys...........I met a lady when I had my mamo 6 months ago and she did rads and NO tamox....she said her daughter who was a nurse was mad she would not take it and that was 15years ago.....one never knows....Liz
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Well ladies, decided to wrap the arm today..........going back to square one on my own.................seems I did better that way...........will let everyone know how I do..............hugs
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yeah my social calendar is full with the white coats.
tomorrow i get evaluated.should be interesting.
Dun--you found a quarter...keep lookin!!!!!
Gma-you know i only did surgery and rads...no meds.still here, this shit started at the end of 09.
Ducky---my heart hurts for you doin that damn wrapping all by yourself.Come on over ILL DO IT FOR YOU.
Square 1 is always best...hugggs everyone.K
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Thanks Gran..........your a good friend.........It is tough, I think I drop the damn bandages, and chase them across the room, more then I keep hold of them.
Just watching TV, and thinking to myself...................why do you put on that PBS station, when they have all the Doo Wop.......artists on............they sing all the 50's songs, and it takes me back to when my husband and I were dating, and we danced to all those great songs............we had themin the 50's didn't we..............one of my favorites was "Could This Be Magic", so of course I have depressed myself now......lol.......so guess its time to put on something gory.............................love ya Gran
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Teka, that's not nice!
Don't be too slow, for goodness sake!
Binney0 -
Hi all, for the first time I had a nice Longgggggg talk with my Onc and he explained to me why he thinks I should be on an AI but said it was up to me.. Then we discussed which ones and why - he would rather have me on an AI and not tamoxifen.. I told him being it has almost been a year and I am willing to try one more time - I will be starting on arimidex again and praying no severe headaches this time.. He told me if they come back to get off immediately.. and will give me a month to detox if we have to change..
I have about 5 left over from the last time and it only took 4 days for the headache to appear, so am thinking of not buying the new script until those are done... He is definately opposed to chopping them in half and start on them gradually - says that won't work - has anyone else tried this? did it help? I will post this on an arimidex board but wanted you all to know how my onc appt went... Off to bed - 4am comes early...
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im soo aggravated with my urologist.. i wear gloves heavy ones when i don't have the compressions on. he alwas calls in Micheal Jackson for me to come in, the gloves, and hat, for partial alopecia..
then, he'll lecture me on self esteem.. this past week, he got it, in spades.. ive been giving him space, as he's in chemo for lymphoma: but, i told him.. this could be YOU so lighten up!!
i don't let anyone discourage me from wearing my garmewnts.. i wear the heavy ones for rennauds, which was chemo induced, as well.. thank you bc..
im just amazed at peoples lack of coutesy!!
its good to "see" you all here. my health is still really poor, infections, wise.. but, other than being in bed so much, and swelling with the truncal from that, i do what im suppossed to do for the le.. often mld, wear my gloves, even in bed part of the time, and excersize a bit, so the darn stuff will move.. im sooo thankful to the ladies here, for the good sense they've given me, to keep track of my le, even when so sick...3jays
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Wrapped myself bilaterally for the first time. I find if I only wrap my left, my right fills up.
So....it truly was a show. When I re-rolled my gauze from the last time, I did so too loose, so as I'm putting the finger gauze on, the roll starts coming apart from the middle. I forgot to cut pieces of tape before the gauze so I'm tearing the tape with my fingers...which then the tape got stuck in the gauze...nightmare. This is the very first time I'm going to try to sleep with both arms wrapped...I'm going to drink a glass or maybe two of wine...
I've done some praying today for you all and for the whole LE issue in general....that our plight would get some recognition and we could get affordable help and garments.
This whole thing is such a nightmare.
Appreciate you all.0 -
3jays - I don't know why some of these docs "don't get it"..
Dawne-Hope - I'm praying you find what works for you!!!
I HATE BUGS.....I HATE LE!!!! There I said it.....ahhhhhhhhh........I got bit on my elbow last night - I'm not a "under the cover" sleeper!! I circled the bite with a pen and put some cortisone cream on it... waiting..... and watching....
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GmaFoley - Thank you! Praying for that bug bite. GRRRRR!
A Wrapping Report:
My left side is my bad side, my right is one I watch carefully. I used 3 gauze wraps on my left fingers and hand and 2 on my right. My left is DRAMATICALLY better! It IS like magic! I ohhh and ahhh when I took the wraps off my left fingers and hand. Wrinkles, baby!
The wrap up my arm on my left side didn't last long. It hurt and so I awoke at 2 and took it off my arm ... but left the gauze wraps on my left fingers and hand. The right side ... everything stayed on all night. Not the big, noticeable difference as the right ... but my right side isn't as bad as my left. I primarily wrapped that side because it tingles if I wrap my left side and not that side.
I wrapped both arms loosely ... but my left still hurt so I'm not doing something or I am doing something I shouldn't ... I don't know. I still am curious if it is OK to wrap the fingers/hand and not go all the way up the arm ... just go about to the elbow. I'm afraid, though, I'm asking for trouble if I only wrap halfway up my arm.
Can't stop smiling, however ... at my fingers on the left side. They're beautiful!
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wouldnt you know it Ducky...your fav.song could this be magic was my wedding song to my X.
Today i finally go for my evaluation for this damn LE....#3 therapist...just maybe this one will get it right.I brought all my bras to show her along with my pocketbook so if anywone wants to jump in i made room.
I think this LE is worst then the surgery and rads combined....along with the pain and fear this is for life.grrrrrrrrrr.
end of rant.hugggggggs everyone.
Does this LE ever go into remission or NED? ha.dumb question right?
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I think this bird knows exactly how we feel Grannydukes - Doesn't he look like he is growling himself GRRRRRRRRR!
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Hi ladies..........reading and wanting to write, but my arm is wrapped, and it makes it that much harder............God I wish I could get out of this dark hole............crying jags, and it comes on all at once.............so much shit to deal with.............its LE, the shore bullshit, kids, just everything in general.............knowing I am going to face the long horrible winter..........God it gets lonely.....the disappointment of not getting to the shore, better yet, the possibility of going, but my son and his wife, 3 kids, and the great grandchildren said they are going..................sounds like fun right............it would be, but they do nothing...........I will be stuck figuring out meals, and they don't eat everything...........not ready for that shit at the end of the season.................this is when you are wnding down, and trying to keep the place clean, and using everything left in the freezer, fridge, and pantry........I don't need a big crowd now, plus none of my daughters are going.........one her son has a golf game for the HS, and the other refuses to go when my sons family is there cause she says..............."Mom, I am not waiting on all them"......she is 2, and they are 5, who do not help, and they are fussy eaters......................love them, but do not love waiting on people who don't chip in and help.............
God help us all
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He does look like meeeeee.
well i went for the evaluation.ha.this #3 said i have stage 0 LE.The swelling i had in my breast is not LE.She said you dont get a swollen breast with truncal LE....I must have done something for it to swell AND I did remember i picked up the 22lb.baby.The burning pain and the fact that all bras are cutting me right where they removed the nodes is scar tissue.She stuck her hand right where it was killin me and she said its from the nodes removal..when she rubbed it i screamed.thats from the surgery.She also got from a conference for LE this thing called breast spots.it covers the entire breast and i should wear it to sleep only on top of a bra.She also told me to go to NYand co.for this cami.....she was wearing it and it looked real good.no seems cause my skin is so sensitive.
Sooooooo now i have stage 0 LE...it means still treating it just like i treated it before.I remember someone said THE BIGGEST RISK OF SEVERE LE IS HAVING MILD LE...Ill be the same nut about stage 0 as i was when i thought it was bad...im still scared...
Does anyone think this #3 dr.is tellin me wrong?
If she was in it for the $$$$$ dont ya think she would have offered me PT?
hmmmmmmmm.I will go to NY and Co. and try on those camis.hey 15 bucks sounds real good to me after all the bucks i spent on all these other bras.
Can I say YAY!!!!!!!
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Oh she also said i could have stretched my arm too hi and pulled something.
If it all makes sense why am i questioning everything she said?
All comments are welcome and actually needed.
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