GRRRRRRRRR I HATE LE..........

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  • Christine5
    Christine5 Member Posts: 78
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    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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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    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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  • ro-berta
    ro-berta Member Posts: 134
    edited August 2012

    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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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    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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  • ro-berta
    ro-berta Member Posts: 134
    edited August 2012

    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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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    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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  • ro-berta
    ro-berta Member Posts: 134
    edited August 2012

    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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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    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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  • Marple
    Marple Member Posts: 19,143
    edited August 2012

    Water gives natural compression.  Swimming is (edit to say, 'can be') a wonderful exercise for LE.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    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.org

    Next 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!
    Binney

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  • ro-berta
    ro-berta Member Posts: 134
    edited August 2012

    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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  • Marple
    Marple Member Posts: 19,143
    edited August 2012

    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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  • ro-berta
    ro-berta Member Posts: 134
    edited August 2012

    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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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    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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  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    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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  • Estel
    Estel Member Posts: 3,353
    edited August 2012

    cookiegal - I hear you.



    ((((((((hugs))))))))

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  • Marple
    Marple Member Posts: 19,143
    edited August 2012

    I notice and admire toned arms too.  And it usually makes me sad.  I used to have them. :(

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  • sandcastle
    sandcastle Member Posts: 587
    edited August 2012

    When one dwells on things you will always notice the negative.......we need to look for the positive.......sometimes talking about it all the time is not a help......life is so much more...Liz

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Yes sandcastle - My DH says, "It is what it is"... What keeps me focused is watching my grandkids grow up(from afar) and Rocking with God in His big rocking chair.. 

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  • sandcastle
    sandcastle Member Posts: 587
    edited August 2012

    Did YOU know that saying "it is what it is" is from Doc Phil.....Liz

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Nope I sure didn't - just seems to be what hubby says when we talk bills... We don't watch TV and never watched Doc Phil...

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  • Galsal
    Galsal Member Posts: 1,886
    edited August 2012

    my quest now is to be able to wear some type of camisole or bra and try out prosthetics yet keeping the LE under control.  the darn expanda-a-binder I wore home and now to provide compression just does NOT work under clothing worth a darn.  not unless you want to wear larger sizes to compensate for it and the velcro front opening bunches up, etc.  grrrrr is right!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Actually, I would love to have any first lady who had LE, because she might help educate about the issue or normalize it - like Betty Ford did with her BC and drug issues. Gosh, I would love that . . . Maybe a conversation could be started about it even if she doesn't have LE (yet). Do you know long post-surgery or TX is she, Cookie?

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  • Teka
    Teka Member Posts: 10,052
    edited September 2012

    Hi Everyone,

    I want a 1st Lady who puts her own health problems on the back burner.    My LE doesn't show, and is never mentioned when asked about BC.   I like Michelle and Ann!!Wink

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    I found an article that says Ann had a lumpie in 2008, no idea what else as I did not read the full article

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Teka, surely you are teasing. I hope your LE never shows, but what does that have to do with anything? Maybe all of us with visible LE and garments should hide in a closet. Personally, I'd rather someone ask about my LE than BC, as this has been a much longer struggle and required greater mettle. Of course I want a first lady that is focused on other issues, but it never hurts to have someone in our camp on the front lines where it can get better attention. LE could be her personal issue (not that she has it, but probably needs to take precautions from getting), but it's also an issue for a lot of other women in this country. It wouldn't be anything new if a politician or wife ever used their position to forward their own views or concerns. I love Michelle's toned arms and the issues she supports, but what has she done for me lately? As Cookie said, this is not about politics. :-)

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    I really am not into the first ladies at all but you girls - GO For IT!

    Really down today - trying to stay positive for everyone - just can't do it anymore.Undecided 

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2012

    GmaFoley - I have been wearing the surgical 2" elastic surgery bra from www.marenagroup.com

    I had a mastectomy of left breast.  It is NOT a mastectomy bra, but gives really good compression

    and runs true to size.  I wear a 42DD and bought the 2X bra.  I have worn it 24/7 until rads when

    I could no longer wear it.  It helped my LE alot.  Plus they are in the $40 price range versus so many that are outrageous!

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