GRRRRRRRRR I HATE LE..........
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My gosh, sandcastle's and galsal's posts are such an illustration of how differently our LE responds to treatment. No wonder we're always in a state of 'what do I do next' -- there is no universal formula for success here. Given the trial and error approach we're stuck with, it's both a wonder and wonderful that you two have found pathways that are working. My subclinical LE arm hurts all day, every day, and I've yet to find a strategy that alleviates that. No swelling at all since an initial few months when I was diagnosed, so I'm glad for that, but wish I could find the right approach to make the ache disappear.
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gmaFoley, post away that is why it is here, sorry to here about the tough time you are having. I can relate as I am allergic to all antibiotics myself.(not that it helps you) just wanted you to know you are not alone and somehow we manage to get through everything without them . Do you have one particular Dr. you go to? just asking i am from Canada and i have one primary DR, which has helped alot when needed. I hope you get things resolved quickly I know the frustration can be just as taxing as the problem take care.
roberta
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Ok I won't keep you in the dark... didn't mean to just feel that I am taking up your time... Someone has been praying hard for me though. So far this morning the redness seems to be down and the neck nodes and swallowing issue has disappeared... Virus - I think not - It was the antibiotic..but that is my opinion..
Unfortunately, my PCP is booked until October and no space to fit me anywhere - so they send me down to urgent care...I have seen all the docs that work down there but they won't step on each other's toes - you know what I mean?
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Gma, good grief, yes--do stay in touch here!
I'm so glad things are improving. Don't get frisky just yet, y'hear?! Gentle hugs,
Binney0 -
Teka - that was when the bug bite swelled... I was trying to get into see him and they sent me down stairs to urgent care - And yes now I am on the mend. Without a antibiotic...
Went out with someone today and was in the heat a little much but stayed in the shade.... Breast is swollen - I have been without compression because of the bug bite... forgot about that
.. I'm ok though.. I see my LE therapist weds.Binney do you think I can do a breast binder now???
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So... I got booted out of LE therapy. Sigh. We knew it was coming, we've reached the end of what insurance will pay for so my therapist is closing out my file and going on a two week vacation (the nerve) at the same time my pcp has referred me to a different PT for back pain (which I blame on the LE, but the PCP thinks is unrelated) Anyway. Next week I'll start PT for my back, and the LE therapist says she has talked to the new PT about what she does not want me doing, because it will aggravate the LE. grrrrrrrr
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Gma, did the surgeon think the breast binder is okay now? If the redness is retreating you can think about compression again.
Cindyl, grrrrrr is right! It's great, though, that the two therapists are communicating. If you have any questions, refer the new one to the LE one. Yikes!
Be well!
Binney0 -
Well I finally went to MY&Co and got the cami...OMG...i tried it on and it felt like heaven.35DD so i tried first the med.it did nothing sooo i said to this wonderful sista who was kind enuf to take me please get me a small.35DD a small was perfect...had a sale buy 1 get 1 1/2 off.the 2 came to 30 bucks.....Ill let you know how it works.Well the price was right after spending big bucks on all the wrong thing....and they come in all different colors,solids and prints...fells like a girdle but not a killing tight one...
ILL KEEP YOU POSTED!!!!
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Gran......I do not remember if I told you....but I bought from QVC a spanx cami.....I think it was around $40.....light compression....very nice.....kind of like a sleeveless T with lace on the top.......Liz
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Granny What are they called so I can look them up...
Edit: GRRRRRRR - I lost my gauntlet!!!
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Just found out My vitamin D level is up to 63!!! It was 26 a year ago... Love those D drops the Chiropractor gave me
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Hi ladies, it has been a while since I lasted posted but I read your comments everyday and feel a connection to you all. I have been really struggling with LE and I recently fired my therapist after she was condescending to me for the last time. After my "LE" Dr. Told me to get a brace for my elbow because of loss of sensation in my hand, my PT said, she is giving you a sugar pill, that's what she's doing. I was pretty ticked off about the whole thing and told the dr I would not go back. So now I am without a therapist. Oh well, she really minimized my discomfort and didn't have much success with her. Got my vitamin d checked because of joint pain and they just called to say it is at 14. I hope I can get it up because I can barely get around! I'm scheduled for surgery on September 11. I'm having an exploratory to try to find a hidden hernia. Went to an ENT last week and he wants to do a biopsy of the back of my tongue to rule out lymphoma. I hate breast cancer, LE, and the whole mess! I would love to feel normal for a few mins every day, wouldn't that be something? Thank you all for being there and understanding, so few people really understand.
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Christine5 - I am so sorry you are going through all this... We are hear to listen any time . The one thing I can tell you, if you read my post above, is tha there is a way to help with the joint pain.. The vitamin D did help me . I use Biotics Research - "Bio-D-Mulsion Forte" . As you see above, I managed to raise mine.. They are drops and you don't "digest them" they go directly to the blood stream through your mouth.. All I can say, it worked for me..
I surely understand your feeling with hating the whole mess... I am really lucky that I do like my LE therapist but I still am thinking that I can't handle the mammos etc every year waiting to see if there is something bad.. My MO says that my cancer won't show up for about 10 years in the treated breast, but how about the other... If I had insurance, I think I would take them both.
I will keep you and the surgical team in my prayers on September 11th.
Remember, any step forward is progress, you might have a new normal - but I don't think anyone of us are there yet... Step by Step, day by day, we can do it with the help each other gives.
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GmaF---these camis dont have a name.ha.i walked in to the NY&Co and told the salesgirl what i wanted.She said it was like an exercise bra where it holds you in all the way down past the hips...im wearing it now and im very comfortable in it....they have them on line but you gotta go and try it on...i would have never thought i would be a small.i wear a lg.or xl shirt cause of these boobies.the strap is also adjustable...
I also bought some bras on QVC but they had no support...I think I have 30 bras counting the after surgery ones.
Ill keep you posted...what works one day for me doesnt work the next....
hugggggggggggs everyone.K
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Achey arm this morning while working - put sleeve on... see LE T tomorrow to measure - post surgery and start MLD I hope... Breast is really sore and swollen right now.
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Good morning everyone. have been wondering how to express my self without sounding dumb, hahaha. Anyhow to get to the point, just finished rads. I only saw RO once at beginning of treatment ( he was on holidays for mth) The last day of rads the rad techs arranged for me to see an R.O due to pain I was having ( figured it was from rads) they said it wasn,t. Anyhow have had swelling and fluid build up in breast from my lumpx,s but my arm has hurt from elbow to shoulder feels at time like I had blood pressure cuff on, same with my chest ,rib area. The R.O said that I would need compression garmet and sleeve( least this one took his time and physically examined my boob and under arm) My quandry is where to go from here. Do I have to go through my G.P for this or B.S ?? course I whipped out on the floor lat night and I am a hurting unit today which doesn,t help. (My grandson decided he was going to wash the kitchen floor for a surprise bless his little heart hahaha) Trying to get back in shape for work I do lots of lifting anywhere from 10 - 50 lbs. and reaching would thhis effect my work ( I think I am having a " day" please excuse me . Any help or suggestions would be appreaciative Thanx
roberta
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Hi Ro-berta - In your case, I would go back to BS and see what he/she says.. How far out of rads are you??? Because the week after rads - it gets worse before it gets better... Usually a month after rads the basic healing is done and some ladies start feeling better...
My RO had no clue either.. If your docs are like mine they had no clue and kept blaming each other and said - "It will get better" - Some people it does and some it doesn't.. I had my best luck with my BS and told him I wanted to be evaluated by a LE therapist.. But this was all a year after I finished Rads..
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Thanx for the reply GmaFoley I am just out of rads. The pain in my breast and fluid have been present since my recission from my lumpx.Waited almost a month after lumpX befor started rads due to swelling and fluid but had to get it going. I have looked on lymphedema info threads but am getting confused a bit ( mind you doesn,t take much to do that hahaha) but the pain is tyring me out a bit the funny thing is my incission doesn,t hurt so that is one good thing . I will get in touch with surgeons office and take it from there then.
roberta
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sorry about the pain, I know that my BS was the person who looked at my boobie and said, you have lymphodemia. I know also that since mine is in the boobie, it can be seen in my mamo
it was my BS who said get thee to a PT for the lympho but sort of think your onco or the rad doc could write the script for it. Then it is all about finding a good PT to work with you
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Proudtospin,hope this isn,t to personal but OMG! didn,t the mammo hurt??? Cause I think with the pain I have in my boob I,d drop kick someone if they tried a mamo on me hahaha. I was very pleased with the 2nd. R,O and let me know that i would need a therepist and stuff. Thanx for listening.
roberta
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yeah I know, someone told me a while ago to take a tylonel or such before the mamo as it just seems to take the edge off!
can not be positive but believe that my swimming of laps every weekend actually helps out on the achie and the swelling, I did not swim during rads but returned to the pool as soon as I could after so you may want to look into that.
I think your pain will subside as mine did
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Water gives natural compression. Swimming is (edit to say, 'can be') a wonderful exercise for LE.
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Ro-berta, yikes! Slipping on the floor is so scary when we're still healing from all the treatment--I'm really sorry that happened on top of everything else!
Here's a website about LE resources in Ontario:
http://lymphontario.orgNext step would be an evaluation by a well-trained LE therapist. They have gentle hands and the good ones have an encouraging word as well, so it's something to look forward to after all the other more invasive treatment we've been through.
Keep us posted!
Binney0 -
Hi girls Yeah the slipping was a trip hahaha, ( never felt so old in my life I am sure it wasn,t a pretty sight) anyway my grandson was so proud at helping his face lit up when i praised him on how clean the floor was ( he is intellectually disabled) so i pretended I did it on purpose. The smile and pride on his face was worth a thousand owies. Just told him to tell me the next time he was going to mop the floor so I could move some things out of the way ,( mainly me ) I will go look up that web site thanx.
Roberta
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ro-berta~what a great thing you did.........to pretend you slipped on purpose even though it was real. Good job he did and what an outstanding reward for him. Sorry for your owie.
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Thanx for the post everyone, actually feeling down today , I haven,t even felt this down when I was diagnosed, so excuse the rambling .Just tired like everyone of having to deal with sore boob, sore arm and everything that comes with it (now my butt and hip,hahaha) Usually I can give myself a slap upside the head but that isn,t working today! So anyhow I am going to sign up for some swimming time when my skin heals up on my boob so that should help. Right now I have enough cream on I would just skim the water anyways hahaha.
roberta
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Ro-berta, do hope you start to feel better, you are a great grandma and helped the little guy even though you were hurting!
hope that you enjoy swimming as much as I do, I get myself into a zone.........also, at my gym there are a lot of aqua classes that are great as well. My head.......does feel better when I swim and I so miss it when something gets in the way
feel better
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hello my friends...feeling a little crazy this week.
***Disclaimer***
This next statement has nothing to do with politics.
When I heard Ann Romney was a BC survivor, I though
A. How does she do all that flying of a campaign without risking LE?
B. (I am going to rot in hell for this)
How would it be to have a first lady with LE?
I mean Michelle Obama is cool, but I do not like that she made sleevelessness so popular and I resent those toned arms.
I am just hating LE so much right now...I have lost my mind!
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cookiegal - I hear you.
((((((((hugs))))))))0 -
I notice and admire toned arms too. And it usually makes me sad. I used to have them.
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