Started therapy again this week..interesting results

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

    Hi all.

    The good news is my big event tonight was a great sucess and I got a lot of compliments.

    I chickened out on wearing my sleeve and glove...it's sad, but I was just too self conscious.

    Do any of you stress out about this stuff? It's the special occasions. I don't even care about other times anymore.

    I did wear long sleeves so at least I had kineso tape on. Now that this is done, I am going to probably get bandaged for the first time on Friday.

    They gave me a gift of...wait for it...a basket of cookies. They are out in the car. I am trying so hard not to go all cookie monster on it. AKKKK!

    Have a beautiful evening. 

    Once they cure cancer I want a cure for calories!!!

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

    Cookie, I love it! Pass those cookies around and we'll all celebrate!Laughing

    But I think you have it all backwards -- if we could cure calories the cancer cure would be a cinch! First things first!

    And hey -- we do what we can, so don't even think of it as "chickening out." It's not sad, it's a sensible compromise. You done good, Cookie!

    Anxious to hear how it goes on Friday. Be well!
    Binney

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

    Very mixed results today...below my elbow all good....down....:)

    above my elbow up....more than even my original measurements...one was really high :(

    I immediately felt like I screwed up and gained weight....but we measured my healthy upper arm and that was 2 CM smaller. 

    Was it my exceptionally frustrating day at work yesterday, was it the 1/2 a beer I had after said stressful day, was it the clonipan after the stressful day, who knows? Could it be the rain?

    Could it be that nowI have a good glove and sleeve, that the fluid is getting pushed up?

    The LE says in general she does not worry so much about the top measurement, that is the least precise and the most prone to fluctuation, and they would rather see my lower arm and wrist shrink and my upper get larger than the reverse.

    TOMORROW--11am--Bandaging

    Yikes. I can wear their bandages for about 24 hours, then I have to do them myself until Monday.

    I just feel like I kind of failed, like if I lost more weight and been less stressed I might have gotten so much better I would not need the bandages.

    Thanks for listening!!!! Having someplace to vent and people to listen makes all the difference.

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

    Cookie, so the fluid is shifting--that's a good thing, right? Please don't think you're "screwing up"--LE is tough, and your LE is beyond tough. I think you're making amazing progress.

    I'm big into bandaging: I do it every night--because it's the best way for me to keep my LE under control. I resent it at times, but the result is worth the resentment.

    When you know how to bandage, you have a powerful tool in your aresenal against LE!

    Believe me, as someone with hand LE--it's great that you got it out of your lower arm. And, you have to live life and have that beer when you want it. And we all work on losing weight, and but can't beat ourselves up about it.

    Let us know how it's going.

    Kira

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

    Well I got one big ol bandaged arm.

    It's odd it's looser in the wrist, then I expected.

    I definitely had my breakdown,I kind of wandered in dazed to the ACS volunteer booth at the hospital and they had never seen such a thing! Literally had never heard of LE. (cute little office tho)

    So the concern is that this could push the fluid down to the lower arm again.

    They want me to take them off tomorrow, and if I think the arm is better do them again.

    TWO MAJOR QUESTIONS......how blue is it ok for my fingers to get? (They were blueish within moments of putting the bandages on)

    Is it ok to try to exercise? Like take a walk. It's a little awkward to walk at all because my stride is thrown off. The bandages keep bumping into my reduced but still pretty big boob.

    I guess it's good that I am trying to type because they really want me to keep moving my fingers.

    I went to lunch in the cafeteria of the hospital and I kind of felt like a freak.

    I have decided that Halloween would be the perfect time for this....I could just wear a mummy costume!!!

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited March 2011

    Cookie - Blue is bad. Blue and cold or blue and numb is worse. Do you have gauze wrapped around your fingers?  Maybe you can loosen it a bit.   Excerise is good - walking is good.  Be sure to move your arm around, pump, and bend your elbow - the resistance of the bandage encourages lymph flow.

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

    Thanks SN...even with the lightest compression I get a bit cold and blue....my mom had reynodes syndrome and I probably have a touch of it....so I went blue even as we started the first layer.

    They said if it starts tingling past a 4 to take it off, but that I would be blue the whole time! It's just hard to judge how blue.

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

    Cookie, if you have a touch of Raynaud's and the blue started right away, I would just observe it, and if the bandages get painful or you loose feeling, then take them off.

    I get a bit dusky in the finger tips very easily.

    The ACS never heard of LE???

    And, exercise with bandages on it really good--it helps move the fluid against compression.

    Brave of you to go to lunch with bandages--I may bandage at night, but I sure don't go out in public with them, and if someone happens to see me in our house with them on, I try and hide them. It's tough.

    Kira

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

    Thanks Kira.

    Thank heavens it's winter, and thank heavens I have my husbands giant jacket.

    I am not sure what I will wear that will fit over all this!

    Have a good weekend!

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited March 2011
    I wore a large mans oxford shirt (truth is I love them anyway!) with the the wrist bottons open.  People is stores became very solicitous.  Smile
  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Kira, you try to hide the bandaged arm?! HOW on earth do you hide an arm the size of a young beer barrel?!

    Cookie, hold your head high and pretend you've just survived some unspeakable, life-challenging disaster that has left you with a damaged arm, but you're courageously soldiering on, determined to regain your joie de vivre and to show the world that you're made of sterner stuff than anybody could ever have imagined.Cool

    Oh, wait a minute! Surprised You don't have to pretend any of that -- it's all true!Kiss

    Live proud!
    Binney

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011
  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Binney--it's why I'm a recluse.

    Seriously, when my therapist wraps me after a MLD session, I go straight home. And if I'm wrapped at night, it's done when no one other than family is around, and if my daughters happen to be home and bring over a friend--I kind of pull down my sleeve over it.

    Cookie--Binney said it best, as always. Hope you're having a good weekend.

    Kira

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

    well just took off the bandages and....I'm not impressed.

    I am a bad judge of arm size, but my fingers are ok, my hand is slightly more swollen, my lower arm looks a lot more swollen, or at least lumpy and mis-shapen, probably the worst I've ever seen it.

    My upper might be a bit smaller in spots, larger in spots, but the skin is very irritated.

    To be fair, the senior LE always had doubts about doing this because most of my swelling is above the arm, and there was a chance it would push any fluid in the wrong direction. To me that's what it looked like.

    I've had it off for 20 minutes and it is already looking a bit better.

    When I wore a regular sleeve that's about what happened, the silverwave bi lat with the glove has been better.

    Thanks for all the support. 

    I am thinking next time maybe this should just be a hand and lower arm thing??

    If I try this again I would go in the AM and have them check it the same day. I took lots of pictures. At least I can tell Dr Francis we tried.

    I actually went to madison avenue and got my hair cut with the bandages on!!! 

    Have a great weekend...lots of hugs!!!!

  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited March 2011

    Cookies: Bite-Size Life Lessons

    As copied from Amazon.

    It's time to pass those cookies around, dearie.

    I just caught up on the whole extravaganza of craziness, nonsense, developments and unpredictable developments. I've been LE MIA for a bit -- as real life called me into action for the last couple of weeks.

    (((((((((((Cookie)))))))))))))

    Obviously, I have no insight -- nor suggestions, but want you to know that I'm sending you lots of heart-felt love & concern.

    You will figure this out. I know you will.

    Grieving.

    Sending hugs for that issue alone.

    Still hits me at the oddest times -- outta left field, when I least expect it: smack.

    Take good care of yourself.

    xx00xx00xx00xx00xx

    Strength and courage.

    Strength and courage.

    Strength and courage.

    (((((((((((Cookie))))))))))))))

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

    Cookie! Brava on the courageous haircut-in-bandages!!Kiss You really are an inspiration (so are you, FaithWink)! 

    As for the lumpy arm -- oh, good grief!Frown You're on the right track with your early morning plan, then have them check it later. Cookie, I think you should trust yourself on all this, because your thinking is so sound and you really are paying attention to what's going on with you. 

    This is some sort of boot camp, yes? We get smarter and braver, but what an experience!Tongue out

    Onward, Cookie!
    Binney

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

    Thanks FAITH

    It never fails to awe me how you can turn a message board post into a masterpiece.

    Sonds like your work is really blossoming.

    Anyway...2 hours later my arm looks a lot better.

    I was a little scared that was going to be a trigger of a permanent situation.

    My guess is that since my wrist still had to move that part of the bandage got looser.

    Still it seems that very little good comes of any but the lightest compression to my upper arm.

    Even the kineseo did not do much on the upper.

    Maybe I stil have some nodes that kind of work and blocking them off makes things worse???

    Anyway I am glad that the silverwave and the medi glove help and hopefully that plus MLD will keep me in the right direction. (I think the key with the silverwave is that the cuff is long and the upper arm is very light)

    One thing Dr. Francis put on the table was having the lymph mapping test....and I am beginning to think it might be worthwhile. Obviously with my history I am fearful of infection, but it may give us some answers.

    Take it easy all y'a'll

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

    Binney we cross posted!!!!

    Thank you!!!!

    At least this whole ordeal left my hair looking better!!

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

    Well I am once again discharged from LE therapy with mixed results.

    Some measurments down nearly 3 CM...but upper arm and elbow up overall. Why elbow???

    I am supposed to get fitted for the "just-a-fit" or "juxt-a-fit" next week. It's an adjustable compression thingy.

    More drama with the mean ortho place and their dumb glove today.

    I asked for a one month follow up instead of three months and they were ok. (Actually 3 weeks.)

    Asst. LE actually cracked me up on one...she was like it's smaller than your healthy arm, what more do you want me to do.

    So the bottom line is we have good control of my hand and lower arm, the upper is still a mystery. It also seems like compressing it just doesn't do good things for the rest.

    Go figure!

    On a happy note, I am on vacation this week. A do my taxes, go to the doctor, cook for the hubby vacation, but at least I will get away from my desk!

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