I wish someone could explain why I have to smile about this

Options
2»

Comments

  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    At the risk of sounding all Pollyanna'ish I was Dx Stage I within days of my BMX losing 3 nodes. Initially had intense PT daily for 3 weeks only to find slight improvement. This was 18 months ago. Over these past 18 months I have managed quite well not needing to wrap or even wear a sleeve unless I was flying. On October 19 this year after a very busy day at work, I woke up to my hand looking like a balloon And my arm not much better. I was able to get in to my LE therapist right away. My arm and hand were 40% larger!!! After two weeks of wrapping, therapy and constant compression, it's back down to 21% larger. Not sure if this flare is ever going to get better but I sincerely wish I was back to my old self with Stage I LE.

    I certainly understand your feelings and sympathize with you, and I'm not even sure if you will take my post in the manner in which it was written, but I guess I'm trying to say "it" can always be worse. I really don't mean to minimize what you're going through. It stinks that it's not enough to have BC but add the bonus of LE and wow, we won the jackpot of "it sucks to be us"

    Btw, you don't have to smile about LE but I do hope you find many great things in your life to smile about. Good luck to you and I hope you have a wonderful Thanksgiving with family and friends.

    Amy

    · Share on FacebookShare on Twitter
  • amygil81
    amygil81 Member Posts: 165
    edited November 2014


    I know what you mean, AmyQ, and I do take it in the spirit you meant it. That's one of the first things we learn as a cancer patient or a disability patient: it could always be worse. Nobody would wish our medical conditions on us. But if I don't manage to smile with my breast gone and my arm swollen and walking on my crutches, then I don't smile at all. I cry plenty, in the shower where I can't avoid my scars and elsewhere, but I do my best to smile at other things when I can. Not  just because someone who doesn't have to deal with this crap tells me too, but because I want to.

    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited November 2014

    This just gets more frustrating. My first sleeve took 3 weeks to get, is to short and a little to tight at the top. the tie dyed sleeve I ordered came in long enough but an inch smaller at the top which is unbearable. The person at the Fig Leaf showed me fabric for a custom one that felt like it had no elastic at all. I have no idea what I'm doing, I feel like I'm going to start crying all the time, the sales person wasn't any help with the possibility of getting a sleeve that wouldn't cut off my circulation and told me maybe I just shouldn't wear one. Great advice! I took the 2 sleeves that don't fit and I guess I'll try to fix them?

    I'm not seeing my LE PT because I have to work on shoulder that's been messed up since surgery 6 months ago, sort of out of socket but it has a name that I forgot as soon as I left the PT office.

    I am so frustrated I have no idea what to do now.

    · Share on FacebookShare on Twitter
  • amygil81
    amygil81 Member Posts: 165
    edited November 2014

    Susan, that is frustrating as hell. When I was first dx with LE, I had a hard time getting garments to fit right as well. I wish I could tell you someone who could magically make it go away. Unfortunately, I've found that it's just a long, annoying process of kissing frogs until you find the prince(ss) that will finally solve your problems. The good news is that once you find the right person, you can often stay with her for a good long time.

    In general, you want your compression sleeves to work as part of the complete process of your LE treatment, with massage and bandaging and the whole thing. So I made a big point of working the whole process through my LE PT. You really do not want your LE to get worse. At the very least, your LE PT should be aware of whatever you are doing on your shoulder and be part of the plan. And even though it hasn't worked for you yet, I have definitely found the custom garments work better for me than off-the-shelf.

    Hope this helps.

    Amy

    · Share on FacebookShare on Twitter
  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    Has anyone tried Lympha-press or a device similar in nature? Here's a link: http://www.medcomgroup.com/lympha-press-comfysleev...

    My LE therapist is ordering one for me as she thinks I need long-term therapy that only a machine like this can offer. There are other companies out there but her recommendation was Lympha-press because the compression can be dialed up or down depending on need. If insurance covers most of it, I might give it a go. Would love to hear of any experiences with this.

    Amy

    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited November 2014

    Amy, I will get my Flexi Touch tomorrow (cost of lympha press x10) but will have to wait to use it until someone can come to my home and go over it with me while someone else takes photos so I'll know how to get it on. I used it at my LE PT's office afterwards I could visually see and feel results. I need the full suit ( no better word for it) it's bulky and strange but I felt so much better I would have sold my car if insurance hadn't covered 3/4th's of it.

    · Share on FacebookShare on Twitter
  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    Susan, so happy to hear it works - I can't wait to get mine. Thanks for the update.

    · Share on FacebookShare on Twitter
  • GG2
    GG2 Member Posts: 30
    edited November 2014

    I'm with you, SusanSnowFlake.

    · Share on FacebookShare on Twitter
  • GG2
    GG2 Member Posts: 30
    edited November 2014

    I followed Amy's link and found the Lympha press sleeve but no way can I afford it. My insurance won't even cover a compression sleeve. And did I read correctly that the Flexi-Touch costs ten times more? Think I'm just lumber off to bed and cry.

    · Share on FacebookShare on Twitter
  • carol57
    carol57 Member Posts: 3,567
    edited December 2014

    cg2, bizarrely, I think sometimes the pumps are covered even when garments are not. Have you checked specifically about a pump

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2014

    I feel you sister.

    Everyone doctor who said I would be fine...I want to say,

    "you forgot the part about the tube sock on my arm for the rest of my life"

    " you didn't mention my greatest love traveling, would become an ordeal"

    "you didn't mention when I would have to sneak out of a 4th of July party to put on my sleeve and compress'

    " you didn't mention my arm needs its own college fund"

    · Share on FacebookShare on Twitter
  • sandcastle
    sandcastle Member Posts: 587
    edited December 2014

    Cookiegal.....YOU are so right.....when I asked my BS about Lymphedema and Surgery.....he said ONLY 1 node....no problem....then it was 4....NO Problem.......Guess What??? PROBLEM!!

    · Share on FacebookShare on Twitter
  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2014

    I hear ya all and yes my LE costs are why I don't drive a new car. Ugh...dang

    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited December 2014

    @cookiegal, This isn't funny but I did laugh about the college fund.

    I have lived my life eliminating stress, never getting caught up in others drama (well after I learned better) the person people could count on and never ever complaining. Since being diagnosed with BC in April my life is drama, stress and if I don't complain I just end up with bigger problems. I thought I could deal with anything on my own, but LE has changed me.

    I'm still avoiding getting measured for the custom sleeve because I don't want to deal with the rudeness I dealt with before. I know I'm messing up but I'm really tired of this sh*t . I hate the fact that my family and friends keep asking, "how are you". The answer has always been "I'm fine" until yesterday when the answer became " I'M F*CKING FINE AND DON'T EVER ASK ME AGAIN". I was so surprised at the volume and intensity of my own voice that I just started laughing luckily my sister, who was the recipient of my response, started laughing too.

    At least we can still drink. We can still drink, right?

    · Share on FacebookShare on Twitter
  • sandcastle
    sandcastle Member Posts: 587
    edited December 2014

    Susan......Many times you have to hit them between the Eyes.......HOW many times can we be asked!!  It is like we are going through the ordeal over and over........I do have a few answers......"We don't feel sorry for ourselves...so please do not feel sorry for ME"  and "Worry about yourself....Do not worry about me"  and YOUR answer was perfect......I have done that already........Liz

    · Share on FacebookShare on Twitter
  • juneping
    juneping Member Posts: 1,594
    edited December 2014

    i developed LE probably 6 months after my surgery. i had 35 nodes removed.

    i suspect it's bc of yoga, i did a lot of inversion posts. my index and middle swelled up. went to see a LE specialist who explained me in details that finger swelling is the hardest to treat. and she told me my LE is very very mild. after doing some research on my own, and i started rebounding, after 2-3 months, i see result. the fingers are visually slim back to my normal size. but i could still feel they are bit swollen when i hold my fist. hope that helped.

    LE PT is just too time consuming for me with the kind of work schedule i have.

    · Share on FacebookShare on Twitter
  • sandcastle
    sandcastle Member Posts: 587
    edited December 2014

    Glad for the Information....Liz

    · Share on FacebookShare on Twitter

Categories