GRRRRRRRRR I HATE LE..........
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(((((Purple and DH))))
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Oh Purple and DH -
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Ok ladies - I did the unthinkable - I let the acupuncturist put needles in the rib area next to the breast nerve pain on my compromised side. I woke up this morning with no breast pain! I am watching the area, but so far no extra swell or red spots. I am just so relieved not to have pain atm. 3 years of this has not been fun.
On the other hand - I did have measurements done a week ago and was up 2-3cm in all my measurements from March. But that was when the acupuncturist was avoiding the compromised side. I will keep you all updated.
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Good news Gma.0 -
great news for GMA! love it when the solution is not a PILL but something like AP
But Purple so sorry to hear of your husband. Don't get me started on the added stress of the insurance comps. Wishing best for you both
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Oh, Purple, I am so sorry! I hate cancer.
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GMA, so glad you found some relief!
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Many thanks to all of you.
GMA Glad for you, but scared too. You be careful !
Take Care all,Laurie
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So sorry Purple. (((((HUGS)))))
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Aw, Purple. That was not the news you wanted to hear at all, at all. So glad they plan to push back aggressively, and hoping that will give him some real relief. Pain just shouldn't be! (Cancer either!)
Indulge together in something richly chocolate, yes? Strength and courage!
Binney0 -
Purple and the rest of you. Please know that I am thinking of you. I am happy for those that got good results and empathetic to those that are not fairing well. Here is a BIG ,BIG ,HUGZ4U and please rely on us for strength and courage.
I want you to know I am in your back pocket.
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Purple, my heart sank when I read your post. Life is so unfair! I'm sending you cyber hugs, too. Please keep us posted on DH's progress.
Carol
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To Purple - and whomever needs one:
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Ladies - even though the pain level is moving up - it is still under level 3 and NOT constant. I think I am on to something here. I do have to be diligent and do MLD and wear my compression every waking hour, but if acupuncture kills the pain, I'm all for it.
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Thanks again Ladies
I SO appreciate all of you !
I have a feeling this will be harder that if it was me ( knock on wood / could be worse/could be BOTH!)
Wondering so many things .... including how people live with no jobs and then soon enough - no health insurance and no money and ...yadyadyad...
but most of all, HTH do ppl. watch their loved one suffer ?
I have watched this before, and made it through to a brighter side, but this prognosis was not for a surgical ' cure". They are only hoping to relieve some pain , which I guess will be good - but LOTS and LOTS of chemo and later, rads. Ugh and ugh.
He has always considered himself my 'caretaker' so this is breaking his heart for me ...which breaks MY heart.... and round and round goes the merry go round.
Yet life is so very precious.
No matter what circumstance , the will to live wakes up so forcefully when faced with these challenges.
But enough for now, This is the LE thread ! :>)
But I do thank you for indulging me.Happy 4th to all who celebrate ....have some fun!
GMA- sure hope you are onto something good.
Take Care Everyone,
laurie
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Purple - So sorry to ready about your DH. I hope he finds some relief.
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OK, I am grrrring about my glove smelling danky.
It's bad enough that is gets sweaty smelling in the summer heat when your exercising with it etc and no matter how you wash it it still smells like your primary school gymnasium .....but this morning.......on my way out to a meeting my tea which had creme in it jumped out onto my glove.
I gave it a quick rinse because I was running late. About 45 minutes went by and I was minding my own business and suddenly I smell this strange smell waffing up towards my nose. I smell this smell like a baby puked up on me....Dare I say that I was horrified to discover that it was my milky glove drying from the heat of my hand.
It has been soaking all day as I am wearing another gardening old one.
Do you think I should hand wash it in vinegar to neutralize the protein the the creme? I just gotta get that smell out somehow. Grrrrrr for trying to LE comply and sabatoging myself with a stinky glove.
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Aw, hugs, I'm so sorry! We're switching our dogs to a new brand of dog food, which means a lot of easing them into it with a few bits of the new kibble in each bowl. I've been grabbing the kibble with my finger tips, hoping to miss the gloves completely, but of course it never works that way. Yuck! All the rest of the day. The dogs love me--everybody's dogs love me. Bleeeach!
I have good luck with adding a couple tablespoons of baking soda to a small wash load--poor woman's Oxy-clean. Give it a try, and I hope it helps!
Hugs (and NO sniffs!)
Binney0 -
Ok Binney, thanks , so I am going to try the baking soda trick and then maybe you can hug me. Haha.
Can't stand glove. I ruined one already by cutting up an onion, I thought I was careful. Good thing it wasn't custom. Gotta run. Tons to do including dang glove!!!!!!grrrrrrr. Phooey
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Just wanted you to know.
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i am wondering how togetherness is doing, i know that she was on the "New cancer? Recurrence? Scared crazy!' thread last month with a touch of what she thought was facial and neck lymphedema? A woman named bexter started it, cause at first that was what they diagnosed her with too. after a while and continuing problems, it is discovered that she has bladder cancer from carboplatin. I am not trying to scare any one, but as she said herself, just a cautionary tale. Drink water! and if you think it is lymphedema moving to your neck, please push to have your bladder checked. Binney, I know you were over there, have you seen togetherness? thanks, just am upset for Bex... thanks and love to my swell gals...kathe
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Kathec, it shows Togetherness signed in July 10th but she hasn't posted in a while. Have you sent her a PM?
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kathec, thanks for the update. I'm really sorry to hear about Bex. Sooooo crummy, but you're right--a cautionary tale. Hoping they can treat this quickly and VERY effectively. She sure had a battle getting a diagnosis…
Gentle hugs,
Binney0 -
Hello all!! Thanks so much for your concern. I have still been dealing with the lymphodema. Going to pt two times a week. The swelling is finally getting under control. I wear a compression sleeve and glove 24/7. The face paralysis Bells palsy as they called it is gone. Thank goodness!! The hand seems to be the worst and my ps mentioned if a MRI or anything has been taken of my arm to check my veins for a bloodclot. The hand is very swollen but the arm is normal. Lymphodema is so new to me. Has anyone heard of a blood clot developing. Also the ps asked how this lymphodema would effect me having surgery to put in TE and the impants exchange. It has been six months since I had them removed due to cellulitis. So not sure when I will try again was thinking the fall. I definitely will try again. I have heard that you can manage lymphodema but some people have swelling constantly. So any thoughts on surgery with lymphodema? Thanks so much for all your help! So glad I found this site.
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Togetherness, hello! Good to hear from you, and really glad the facial issue has resolved.
Blood clots are not related to the lymphedema. But blood clots can cause swelling too, so sometimes it's necessary to make sure the swelling is not being caused by that before going ahead with lymphedema treatment. The test for it is usually a doppler.
Here's information about surgery in an area affected by lymphedema:
http://www.stepup-speakout.org/Emergencies_and_Med…Be well!
Binney0 -
Togetherness, We are in your back pocket.....so don't squish us when you sit down for all those doc appointments!
I think they can wrap your hand and sleeve for surgery. Your ps sounds uneducated with the LE but at least he is curious so that is good.
I am just going to grrrrrr a bit. Grrrrrr to hot garments in the summer. I want to wrap all the docs in denial in my black garments and project them towards the blazing hot sun. Anyone else going to help me?
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I'll help you! Let's also include all the nurses/docs who have told me, "You should have a port!" instead of having blood draws and IVs in my foot. Grrrrr....a port for the rest of my long life????!!
I had bilateral DIEP recon. a year ago, about five months after LE diagnosis. I wrote on my arms, wore special bracelets during surgery, talked to all the docs/PA before surgery and nurses afterward. I put on sleeves as soon as I could in the hospital room. My LE swelling actually went down. Granted, I have a pretty manageable case and haven't had to wrap.
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Thanks for the info. Yes my ps is clueless about LE, but is concerned about my well being. There are very few that seem to understand LE and with me being a newbie this forum is great to come to and learn from you pros! I am headed in the right direction with the LE. The other two portions I was given other than the TE and implants were laitismus flap or tram flap. None are great options, but he wants me to give me all the options available for my situation. So I will be researching those forums as well on here. Lots of decisions to make and just hope I am more successful this go around.
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togetherness: another option you might want to look into is fat grafting. Check the reconstruction forum there are several threads about it and look at miamibreastcenter.com for pictures and a thorough explanation of the principles behind it. Especially effective if you didn't have rads.
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togetherness, DIEP flap doesn't take any muscle whereas Tram flap does, just FYI. I am very happy with my result, including the tummy tuck!
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