What's wrong with your arm?

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  • Marple
    Marple Member Posts: 19,143
    edited March 2011

    OMG.............ROTFLMB

    (Yikes, at the top of the page my post looks a bit weird.  I'm reacting to the last post on the previous page..........not the topic.)

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    suzybelle!!!

    That is funny.

    With the sleeves ...It's not so much the silicone as the shape.

    So far the LSC bi-lat is the only thing that does not push the fluid down...it has a skinny lower and a wide upper. Problem is it's not enough compression. Tomorrow I get fit for the Jut-a-fit?? Which has velcro to adjust the compression in different arm sectors.

    My husband is keen to book our train and hotel and make a vacation out of the whole trip. I give him credit for working around my flying concerns.

    If these were just random people it would be one thing, but it's people in both our industry, and while my BC is not a secret, I don't tell everyone I meet. It will also be warm weather where we are going.

    So FOR THE GOOD NEWS

    I may have found a bit of a solution.

    I wore and old sweater with long lace cuffs today,,,and the grubby hated glove does not grab your eye the same way.

    If it had been a gauntlet, it would have been covered.

    I went into my husband's work (a tv network) and met everyone and just pulled that damn lace over it.

    So I may end up looking like a sister wife from "Big Love" but it's the start of one solution.

    Dinnertime!!!!

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    SuzyBelle - Oh, please tell someone that... LMAO... OMG...

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Suzy, having just watched the finale of Big Love, that image is hysterical. Imagining you with a long braid.....and poofy sleeves.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Some good news today.

    I went to a LE fitter in NYC today.

    They had some more atractive options.

    They had a little juzo gauntlet that did seemed to be ok. They are dying one black for me. (They are only 25$ each, so if they work, I can replace the beige one more often,)

    The fitter felt that the only sleeve that would fit me (beside the silverwave) would be a custom. My favorite of the LE's had mentioned this as well. Insurance will cover.

    So they will make me a juzo sleeve in beige and black. They are also ordering the juxta-fit for night.

    Slightly bummed when she said "you have a lot of edema in your upper arm" but hey it is what it is.

    The most exciting part, they have another company that makes custom gloves in a variety of fabrics. She didn't go with them, because she feels they are not as effective as the juzo, but she did show me a picture of a special sleeve they made for somone going to Fashion Week.

    It was an all in one with sort of sheer fabric and a seam all the way down.

    So having an option to the grubby glove is a good thing. If the lil gauntlet can work part time, and I can find some really long sleeves I may be in business.

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited March 2011

    The tech at the pharmacy asked me what that "thing" was on my arm.  So kindly explained to her that it is a compression sleeve to push the lymph drianage out of my arm.  I needed it because they removed all my nodes because of the breast cancer.  She said she had never seen anything like it before.  It doesn't bother me, so I just calmly expain it.  I don't mind educating people. 

    Unlike the nurse who was rude because I wouldn't let her take my blood pressure in my arms.  She said, so why can't I use your other arm.  I said because I already hame lymphedema in my right arm and I don't want to have it in the other arm.  She just folded the cup and walked out.

    I'm thinking, DON'T LET THE DOOR HIT YOU!  NJ

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    Norma - that reminded me when we lived in TX and I had to have surgery. The pre-op nurse actually argued with me because she wanted to use my right arm and I wouldn't let her! She thought she would "show me" and said something to the effect that she would "just have to talk to the anesthesiologist about this." I said, "You go right ahead." Lo and behold, she came back in and said that he gave the approval to use the left arm (they were removing a small lump from the left breast (when I had one), so the norm would be to place the IV on the opposite side of the surgery). At that point, I looked at her and said, "Great. Now you can go ask him for permission to have my husband place my IV." There was no way I even remotely wanted her to stick me...

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited March 2011

    Nordy,

    I went to a psycologist for a couple of cancer therapy sessions.  She told me that she would tell everyone she had a double mastectomy instead of a single so they won't take bp in her arms.  Then shr would have something done where shr had undress & then the "true" would be seen, onaly single mastectomy. She said she got tired of saying no and having to explain. But then she gets caught in hear lie. 

    I'm not to that point yet. I try to use it as a teachging experience for them.  NJ

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  • Omaz
    Omaz Member Posts: 5,497
    edited March 2011
    Suzy - Oh, that's funny. 
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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    So I have really been trying to get myself out of the funk/social anxiety about the lymphedema.

    At the last minute I decided to go to a charity event tonight where I got to meet some people who I really admire, and do some really good networking.

    I almost didn't go. The only dress I have down here is sleeveless, and after several hours of shopping for a shawl or sweater, I realized my outfit just looked better on it's own, even with my puffy arm. I wore a really big ring I inherited that I had not worn in years, and people noticied that not my arm. I didn't wear the compression garments, but the event was just two hours long and a few minutes from home.

     I'm so glad I went, and I felt like my old self for a few hours. I don't know why but the LE makes me feel like I need to stay home and hide in my grubby glove.

    I have been struggling to stay on a diet, and I realized today if I hide from my life, I am going to be depressed, and give up, and that's not ok.

    I also realize that if I found out I had mets at my next oncologist visit, I would wish I had not spent my time obsessing over my arm and hiding.

    Don't get me wrong, I still have been dealing with a lot of emotjons over this.

    But I am going to have to live my life, whether that means letting people see my arm, or garments or whatever. Right now my LE's not that bad...just odd, and I need to appreciate that.

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  • Estel
    Estel Member Posts: 3,353
    edited March 2011

    cookiegal - That's awesome!  It sounds like you turned a corner tonight ... and that is SO GOOD!  I think we all struggle with trying to get our lives back ... not only from BC, but from this d@*% LE and it sounds like you've made some progress in doing that ... may we all reach that point: 

    "But I am going to have to life my life, whether that means letting people see my arm, or garments or whatever." 

    Yes!  May we all reach that point and stay there!  Laughing

    We're all going to have our days ... but THANK YOU for sharing!  I so want to get to that place too ... I'm getting there. 

    xoxo

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Cookie, LE sent me into hiding and social withdrawal and it has been a struggle to dig out. Good for you!

    I did post about inflammation "sickness" which is common in cancer and mimics depression--found it in a textbook, and it talks about social isolation as both inflammation sickness and depression.

    LE makes us hide, but when we see brave women like you and the others on the board de-stigmatizing it and rejoining life, it is very inspiring.

    Kira

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  • Marple
    Marple Member Posts: 19,143
    edited March 2011

    Bravo Cookie!! 

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  • Omaz
    Omaz Member Posts: 5,497
    edited March 2011
    Well said Cookie!  You sound so strong.
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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited March 2011

    Here's to three steps forward and only one step backward -- for all of us!!! (Instead of the other way around.) Figuring out how 'to make it work' is such a triumph.

    It's so great for you to be candid here, Cookie.

    Each of our individual journey's seems so personal & isolated & yet here we are, all together in very similar boats.

    Here's to all of us: conquering fears, prejudice, ignorance, depression, an uninformed medical community, insurance that scratches the surface -- whatever it takes.

    Let's rejoice over having the opportunity to wade thru the LE quagmire, together, urging each other forward and onward.

    All rightie then!!!

    KUDOS, Cookie!!

    xx00xx00xx00xx

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Thanks FAITH and everyone for all the support.

    I think what inspired me was the picture of the woman who had the custom made sleeve made to go to fashion week. I mean if she can do that.....

    Another day a new challenge.....I am meeting some girls I knew in elementary school, not close friends, but nice enough I just am not sure I want to have the whole BC conversation. So then it's garments off?

    we'll see

     Have a great day!!!!!

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  • moogie
    moogie Member Posts: 499
    edited March 2011

    I salute you all! It is hard to have a condition everyone can see, and then they ask if you had a mastectomy, and then I want to ask them if they have a Brazilian wax. Too personal.

    After so many questions when my arm was wrapped, I got tired of truthful educational moments and went with whatever odd idea came to mind. " I'm a professional. ARM WRESTLER. Keeps me limber. Want to Kick butt Friday, its a grudge match"...  

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  • Omaz
    Omaz Member Posts: 5,497
    edited March 2011

    Kick Cancer's Butt!

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  • Estel
    Estel Member Posts: 3,353
    edited March 2011

    moogie - I love it! "I'm a professional arm wrestler ... keeps me limber." LOL! I'm going to remember that one! :)

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Of course! The professional arm-wrestling circuit!Laughing When's the next meet?

    Actually, that's not even very far from the truth, moogie -- LE is an extreme sport, for sure!Tongue out

    Be well!
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Love the arm wrestling story.

    It's so ironic, so I met these girls from elementary school today. Again not close friends, but they were in NYC and found me on facebook.

    It turns our one has a rare condition where the fluid from her brain leaks down into her sinuses...and she has had three brain surgeries.

    She has to wear a compression mask when she flies.

    So I felt pretty silly that I took off my sleeve to meet them.

    Still not saying I'm ok with this but dear god...I'll take fluid in my arm instead of leaking out of my brain.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited March 2011

    Wow, Cookie, talk about putting things in perspective.  Thanks for sharing, and thanks to your grade school classmate for sharing also!  We all need each other, don't we?

    Dawn 

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  • lago
    lago Member Posts: 17,186
    edited March 2011

    Cookie gal there are plenty of athletes that wear compressions sleeves for warm (improved performance) but many as just a fashion statement. Tell them you plan on playing football later on and didn't want to forget your sleeve.

    I was all set with an answer when people asked me about my hair loss. I was going to tell them I shaved my head in protest of genital mutilation in the middle east, Asia and Africa. Oddly enough no one ever asked me about the scarf on my head. But talking about genital mutilation usually shuts folks up.

    Just tell them it's for a medical condition and change the subject. They really don't need to know the details. Many don't want to know the details.

    Seriously my BIL asked how I was doing the other day. I said fine. He said something like "that's a rather bland answer to my bland question." I replied "What, you want details?" He cracked up… but still didn't ask for details.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Lago that's a pretty good answer.

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

    I've truncal lymphedema, and daily take BP on R arm due to high BP.   I also wear a compression bra.   How else to take BP.   Hi! cookiegal.

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    Teka - you can take BP's on your leg in the calf area (sit with your leg up on something - like the couch while taking it). It may vary a bit from your arm, so you may have to take a few days to know where the "norm" for your leg is, but it should be fairly close.

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

    Nordy,

    Thank you for the information.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited March 2011

    Teka,

    I was taught to lie down for 5 minutes before taking the leg BP.  I set up the cuff, then lie down, so my heart is level with my feet, then my BP readings are very similar to the ones I usually had in my arms in the good old days.   

    Dawn 

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

    BoobsinaBox,

    OK! Thank you.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    Y'know there is an aspect of this that it's just rude to ask when you just met the person.

    I was at a lunch today and the priest of this big church asked, and I'm like you really want to know the answer?

    I had breast cancer and now my lymph nodes don't work.... seriously, he should have known better than to call me out in front of a group strangers.

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