what to do if....

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annadou
annadou Member Posts: 221
edited June 2014 in Lymphedema

Hello to all you fellow sufferers!

What to do if ...

Ive done the wrapping -since November Ive been wrapping during the day only -I cant do it 24hrs its 38c here where I live- I have to have respite at night -maybe thats wrong??

The sleeves and gloves dont do much -if  anything they make it go to my hand more -done Mediven ,Lymphedivas, solidea ,jovipak....

Is there any hopeless cases out there like me?

I go 2x a year for therapy-cant do much else-have to work as well-have to pay for it...

Anyone here in my area(Chania Crete,Greece ) please visit me

Sorry, sorry I know that there is worse out there

xxAnna

Comments

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

    Anna, please don't be sorry about bringing this up -- it's not an easy thing to deal with, and we all sure get it! Lymphedema is just endlessly able to frustrate us all.Frown

    Here's the thing: that 38c is very hard on the lymphedema, so using compression when it's that hot is even more important than when it's cooler. Of course it's also a whole lot nastier. It's 43c here (which is 110 for those of you using Fahrenheit), so I simply can't go without compression at night. But on the other hand, wrapping is mighty uncomfortable. So I use a Solaris (or JovIPak) night sleeve/glove combination, and during the day I store it in the refrigerator (Suzybelle stores hers in the freezer for even more cooling power). Because it's foam-filled it stays cool quite awhile.

    I also sleep with the fan on above my bed (while DH cowers with his head under a blanketUndecided). 

    I'm not sure any of that is any help. At the very least please know you're not alone -- we're all (except for our Aussie sisters!) toughing it out through the hot, humid months and looking forward to the cool-off season. Keep us posted!

    Stay cool!
    Binney

  • NatsFan
    NatsFan Member Posts: 3,745
    edited August 2011

    In addition to the ceiling fan, we finally had to install a portable room air conditioning unit for me (the kind of unit that looks sort of like R2D2 from Star Wars and has flexible hoses you put in your window, but that doesn't take up the whole window like a window unit does).

    We power the portable unit up about an hour before we go to bed, and I have it set to the lowest possible temperature (64 degrees F - about 18C). That way we can sleep in a cold room without running the whole house AC and spending a fortune.  

    And like Binney's DH, my poor DH and the chihuahua shiver all night under a mound of blankets. Tongue out 

  • jinky
    jinky Member Posts: 746
    edited August 2011

    Annaduo ,I am so sorry you are dealing with lymphedema. I'm no expert but I would just wrap my hand at night to see what happens. I have Medivan sleeve and glove and my glove is 5" past my wrist and this really helps le in your hand. Also do you have a piece of foam to put in the night time wrapping and your daytime glove? You may be like me and need more pressure in your hand.(mine is the back of the hand). It's all worth a try. My oh my I don't know how you all stand the heat. If it gets 27c here I call this really hot. I am in Nova Scotia Canada.

  • jinky
    jinky Member Posts: 746
    edited August 2011

    If the fluid is going to your hand I don't think you have the right fit garments.....maybe too tight at your wrist.... try your garments after you wrap your hand for the night and maybe then it won't go to your hand... don't forget to put foam or something in there....I love Mediven garment as they are heavier and I need that.....wish you could try another fitter.....what about the hospital....do they have one..... see what the measurements are.....that is where I go and I do my own mld and don't go for therapy..... Wish you were here and I could try and help you. le hugs jinky

  • Suzybelle
    Suzybelle Member Posts: 920
    edited August 2011

    Hi, Anna:

    Excellent advice from all above - and please don't be sorry...LE is hard, and hot temps. just seem to make me flare non-stop.

    For me, it has taken constant experimenting with everything to come up with what works.  Diet, wrapping, kinesio tape, night sleeve, compression garments, temps, all of it - and I am constantly tweaking my LE plan.  I look at it the same way as gardening, my job, whatever...it just takes constant improving.  I'm pretty happy with how things are right now, in spite of a horridly hot summer.  And like you, I have to go twice a year and get worked on by my LE therapist.  I have just come to accept that it's part of the plan that works. 

    Take care and hang in there...

  • annadou
    annadou Member Posts: 221
    edited August 2011

    Thank you all for your encouraging words.

    How I would love to be in Nova Scotia Jinky-maybe we should swap homes!

    Hugs to all

     Anna

  • annadou
    annadou Member Posts: 221
    edited August 2011

    Suzybelle-how did you get on with that kinesio taping?

    Its next on my list when I get the summer over

    Hugs

    Anna

  • Suzybelle
    Suzybelle Member Posts: 920
    edited August 2011

    Anna,

     I am not doing the tape much right now.  It's been 100 degrees here most days, and when it's this hot I have to wrap and do compression around the clock.  I can't seem to figure out a way to do the tape and apply all the sleeves without ripping the tape off my arm!

    When it cools off, I will start doing the tape instead of constant compression sleeves every day.

  • inspiewriter
    inspiewriter Member Posts: 876
    edited August 2011
    Natsfan we do that also--run the window A/C all night. Really saves on the electric bill and keeps us cooler. (though of course hubby is never as hot as me)Laughing
  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2011

    Suzy, have you seen the Ezy-As? It lays the sleeve down over tape or wound dressings without disturbing them:
    http://www.ezyasabc.com/

    Also, it's just easy to get my sleeve on without all the tugging. I really like it.

    Just a thought,
    Binney

  • BeckySharp
    BeckySharp Member Posts: 935
    edited August 2011

    Binney--It looks as if the Ezy-As would stretch the sleeve.  No?  I am tired of all of the tugging.  Becky

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

    That's what I thought when I first saw it, but I've been using mine for about a year and have had no problems with it. It's not a whole lot bigger than my arm, and it's not stretched for long. Also I thought, who needs another piece of LE "equipment" lying around the house? But for me it's been a very helpful addition.

    I do have one sleeve that is a tad too tight at the top, and with that one I put it on the Ezy-As before I start my shower, so it has a chance to sit there awhile. It takes the over-tightness out of it for that wearing, but as soon as I wash it it's tight again, so I don't see it stretching the sleeve out of shape. 

    There's another kind of donning device, like the Slipeez or EasySlide, that is a sturdy, slick fabric tube you put on your arm, then slide the sleeve on over it and pull the device out from under the sleeve, but you have to use a door knob or your foot to hook the Slipeez to pull it out. It's more of a hassle (and I doubt it'd work at all over Kinesio tape). I like the Ezy-As because it lays the fabric down on my skin, even right after a shower (if you know what I meanTongue out -- damp skin, talk about a tug-o-war!)

    I don't know anybody else who's tried it, but when I showed it to my fitter she flipped over it and now stocks them and says her other patients love them. If you try let us know what you think.
    Binney

  • BeckySharp
    BeckySharp Member Posts: 935
    edited August 2011

    Binney,

    Thanks for the info.  I may try it.  I have the EasySlide and it does not work.  My sleeve just slides with it no matter how much I try to hold it up.  My therapist even tried pulling it out for me and we ended up laughing over the failure.  It is getting easier to get the sleeve on though.  Becky

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

    Becky, I gave up on the EasySlide too, and I wish I'd ended up laughing! One of the most frustrating things about LE is how clumsy it makes me feel, and going through the contortions of trying to get the EasySlide out from under my sleeve brought me to tears.Frown Other women use it without problems, though, so it's a viable option for those who aren't coordination-challenged like me.Embarassed

    Happy Saturday!
    Binney

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