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

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

    Ok, it looks like I will opt for both LOL - lets see what that does... Your responses really made me laugh and cry all at the same time... Thanks!

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

    Liz, three cheers for the Medical Center!Cool You can get your own neon-pink bracelet free from The Reid Sleeve People, here:

    http://www.lymphedema.com/

    Click on "Free LE Alertband" on the left-hand side of the page. You can order them for yourself (be sure to get two if you've had bilateral surgeries), or order a dozen or two for your local bc or LE support group. I keep one in the glove compartment, one with my wrapping supplies (so I can grab the whole shebang in case of an emergency), and one with my insurance card in my wallet.

    Not only are they free, but the Reid Sleeve employees volunteer to fill the orders and mail them out on their own time--an amazing service! It's always a boost to remember how many good people there are out there who really care about us lymphers.Kiss

    Be well!
    Binney

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2012

    My opinion - forget the sock, write it DIRECTLY ON YOUR ARM. You don't want someone removing it because it's not sterile. Marker ink will come off with alcohol later.

    Best of luck with the surgery. Here's to B9 results!

    Leah

    Edited for typos. Again.

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

    hmm that would be hard it is my primary arm.... Don't think they would understand DH's handwriting Wink

    Edit: thanks for making me laugh again.. I know its not funny but I can imagine my hubby writing that on my arm and not understanding why I told him to do that. 

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

    One of the ladies here a while back wrote directly on her arm "No BP, No IV, Restricted Extremity".

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited August 2012

    Hey ladies............dropping by to say "Hi", and to say, nothing has changed..................new therapist..............same bullshit..................it is costing me a fortune............$320.00 a month, and they are doing nothing any different then the other therapist did....................I am fed up, am giving up, and will learn to live with what I have.........................and these people are all "specialists".............God help the ones that aren't..............I'm in the "gap" with my meds which means I'm paying more then the insurance company; is now..............and paying co-pays for something that is showing no result................they are repeating what I already knew from a whole year of LE bullshit........................I've had it............I give up.............it is not worth the depression going, paying, and getting no result causes.......................and I'm not a quitter.............but this has got me down....................hugs. 

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012
    Doctors pawn us off onto therapist.Frown
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  • sandcastle
    sandcastle Member Posts: 587
    edited August 2012

    I...Truly, believe with this we are on our OWN.......I did go to a LE last summer and it seemed more Hokus Pokus to me.....it is all trial and Error for us and them......I have been on my own since last August....and I will continue to do so......yes....it can be depressing....but we did not quit...just took a step back and moved on......Liz

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

    Oh boy - Ducky and Liz - that kinda gets me down, but I must tell you I have and OT that just got his certification last November... yes, I decided to be a guinea pig and try him out... he has been an OT for 20 years... My breast is almost back to normal and he worked with me on the trial and error... he has been an encouragement to me.. The error was that my good side had an axillary node that didn't want the extra load - so we split the load and went down to my inguinals ... it works - kinda interesting how you can split your body in half and make it work... I had to pay $300/visit but for me my LET was worth it.. I am going to see him one more time, tomorrow, before surgery on weds. Hoping I don't have any ill effects.

    Love you Ducky and Liz and I will be here for you even though I'm just a newbie... 

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

    GmaFoley, I drain each side down to the inguinals, too. I have had slight swelling on my "good" side even though I didn't have a sentinel node biopsy there. After switching to draining each side separately, I rarely have swelling on the good side. I think I have scarring from when I had implant reconstruction. Even though that's been undone and I've had myofascial work on my scars, I still drain each side separately. It works well and I seem to be able to do it more effectively that way, so I stick with it.




    Ducky, we are near each other, and I would gladly share/compare notes. Doesn't seem right you can't get good treatment and properly fitting garments.

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

    Panic mode again... sorry -

    Went to church this morning, found out one of my friends is dying from serosis of the liver from his meds.... had a heart attack a few years back so he can't have a transplant...

    Went home and I made my own compression binder for my chest.. cost me $8 for the material LOL - put baby snaps on it instead of that monster velcro - I think I like it.. Figured it would be a good change after the bandaging comes off. Our hospital doesn't give you one of those expand-a-band binders.. I looked at one of them and figured out what I needed to make it.

    Now going to finish sewing my to peasant blouses and as I'm sewing I realize I need button up blouses for this week LOL... Its ok I like these anyway and can use it when I feel better.

    I have those butterflies in the stomach right now... ok ... just breathe... you will do fine.... that is what I tell everyone else.... correct???  I really thought if I kept busy - it wouldn't be in my head....

    *******GROUP HUG******** 

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

    Hey ladies to top off my day I re-read my US report. The radiologist messed up how big my scar tissue was and how big the lump is - "Thickened skin measuring 3.7 X 2.2 x 2.9 mm" and my nodule "measures 4.2 x 3.9 cm" Hmmm my thickened skin scar is way bigger than my lump/nodule... Should I bring this to the surgeons attention???

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

    GmaFoley,

    Yes, when surgeon comes to see you before going into the OR.   Now breath!!Wink

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

    10mm = 1cm

    Scar tissue being measured in mm.

    Lump being measured in cm.

    Undecided

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

    Teka - nope that would make the scar tissue smaller than the lump and that isn't correct.

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

     Typo? 

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

    Did anyone feel incredibly emotional about the guy in the Olympics running with no feet. I wanted so badly for him to win. I felt some strange kinship. I have a limb ruling my life.

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

    Don't have TV but heard about him on the radio. My son runs a adult flag football team and his quarterback was paralized from the waste down and told he would never walk again... He is a quarterback, standing and running on his feet! - The QB told me every step he has phantom nerve pains, but wants to beat it... and he does - awesome and acurrate Amazing.

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  • KS1
    KS1 Member Posts: 632
    edited August 2012

    Here's my LE/CA GRRR for the day.  I used to pride myself in my ability to travel light, easily sticking all I needed for a weekend in my laptop bag, and never ever checking luggage.  I just assembled my meds, wrapping materials, day garments (arm, body, legs), swell spots, extra Tribute, and various other LE accessories (kinesiotape, donning gloves, garment bags), and try as I might, I can't get them to fit in a carryon-sized bag.  One of my meds (lovenox) takes up 1/3 of the suitcase, but I can't check it because it has a narrow temp range.  So I guess I will have to check some of the LE stuff and pray the airline doesn't lose my bag. 

    I know that wheelchairs/crutches/walkers etc. don't count as carryon items.  I wonder if the same is true for medical supplies ... 

    KS1 

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

    KS1 - I almost feel like I need a diaper bag everytime I go out now for all my stuff.. except I call it my BC bag.

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

    Oh GREAT - Now surgeon calls me back and decides he wants to have a Mammogram before the surgery - today or tomorrow.. The last one was in January..

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  • KS1
    KS1 Member Posts: 632
    edited August 2012

    GmaFoley, what a pain! 

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

    KS1 - Yes it will be a PAIN - it is a longer more view diagnostic mammo and I have painful breast LE..

    I talked to surgeons assistant and this happened because I mentioned I wanted to make sure he had my permission to take out ANYTHING that looked suspiscious... When he got my note, that is when he decided to do this... Guess it was my own darn fault.... but I would rather him take everything than miss something.... correct? or am I just crazy!!!

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

    GmaFoley,

    Good surgeon!!   

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  • ohio4me
    ohio4me Member Posts: 491
    edited August 2012

    One more day with this post MX drain and then I can get some serious LE exercise going. Been seeing a massage therapist three times a week for LE drainage since it's challening to get the left arm to reach the right side easily (or maybe I took the lazy way out). LE has been behaving the last two weeks - until last night. Didn't do anything out of the ordinary but lots of MLD (and prayer) helped. Then - I left the house this AM and forgot my compression sleeve. Hmm... I think the extra sleeve is going to find a new home in my purse.

    I have one more week off and I promised myself I would learn to master wrapping. Need to practice today. I've been putting that off but I could have benefited from wrapping last night - I just plain don't want to do it.

    Okay - now that I admitted I am totally resistant to wrapping it is now time to get over it. 

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    Ohio, ahhh...the power of committing to something in public!

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited August 2012

    Ladies.......maybe i am giving my LE people a bad rap....................I have no doubt they are excellent in their field..........its just might be me.................all I want is a good fitting garment, something for bedtime, and be done with it.............I'm sure if I ;had all the right things to deal with it would be ok...................my LE. is not that bad, but it is LE just the same

    My upper arm is not small......as I gained weight, so did it.........however, even when I lost a vast amount of weight, the upper arms flap like "batwings", so maybe that is the problem with them getting the right fit.............It is just such an expense, and I never mind spending money on my healthcare, and good food, .............but ...damn, when the healthcare isn't working.......................and the food sucks................I get angry...............guess I made a point huh...................off the soap box for now....................love you guys.

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  • ohio4me
    ohio4me Member Posts: 491
    edited August 2012

    MLD question - my upper arm is more swollen than ever before. It's never been 'real' bad but I'm taking it seriously.

    The question - is MLD effective while wearing the compression sleeve? Just wondering for the future. In my mind, it seems like MLD is good with or without a compression sleeve.

    I'm off to give it a try now and see (can't hurt). Just wondering if it's a wasted effort. I mean, when I fly I 'massage' my arm on the plane while wearing compression but I didn't have swelling to care for.

    Look forward to answers - or will post my findings.

    I am really trying to be patient with this post surgery stuff by tomorrow the drain comes out which is a good thing since I just lost my pateince. That tube wants out and is annoying me and now my swollen arm... No patience left for the day. Off to do MLD than Flexi then whatever.... I guess this is the time to learn to wrap. Maybe my arm knew I promised myself I'd learn to wrap.... I just know Little Martha (my arm) has a life of it's own.

    Did I forget to say 'argh'?

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

    Awwwwwwwwwww Ducky....It will work out.Its gonna work out...just dont let it get you down....

    LE is so underestimated...people look at me when i say i have LE and they say where?????If I say in the trunk they think im nuts.no one really knows shit about it except here....

    Im gonna start PT once again but they told me to go to Norstrums(sp)ya can tell i dont shop there.but to get messured and fitted there....any suggestions?

    Have I told you lately how much I hate LE?well I do!!!!!!!

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

    Gma, that typo would be funny if it wasn't just plain maddening. So sorry, but clearly just a brain blip moment for the lab person. Do tell the doctor about it. Sorry about the extra mammo, but that's going to be so reassuring to have. Prayers for continuing wisdom from your doctor--it's lookin' good!

    Ohio, I asked my therapist that same question once. She said, "Do you mean MLD is more likely to happen if you can do it with your sleeve on?" And I admitted that was the case--why else would I be asking!Embarassed She said it's more effective if you do the massage skin-on-skin, because it's moving the skin that matters, but doing it with a sleeve on is much betteh than not doing it at all. (Partly, that's true because clearing the nodes and chest area is an important part of the process, and you can still do those areas skin-on-skin). So DO let us know how your experiment turns out. (We should all get honorary advanced degrees in medical research!Undecided)

    Ducky, oh, how I hear you on all that! Expensive, frustrating, and so hard to get to a place where we can face off with the stupid stuff--not to mention staying in that place.Frown You have so much spunk and spirit--hang in there with this!

    August, and the whole next week here is temps above 110 -- GRRRRRRRRRRRRR!YellFrown
    Binney

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