Joining the rapt club (not)
Comments
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Lymphedema done me wrong,
but at least there's a song...
and I'll sing it out loud and clear
just gimmee some lines
with accompanyng rhymes
and some music to take you all there.... yeah!
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Really, breastcancer.org should come with audio. Musical, I nominate you to sing and record the LE tunes! Actually, I don't think you're the only musical person in the forum. Any other voices out there? We could have quite a chorus.
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Collaborative writers please
First things first and words we need
Singers muzo's come along
Come and help us sing this song
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Musical,
I have been having massage for lymp for over three years and I have been told to never wrap on my own. That was from my LE therapist in Palmy Nth. Came down to Dunedin and LEist at hosp wrapped for one week and said no more and don't bother as it hadn't made too much difference. Sleeve doesn't really help either but they have nothing else to offer. Now paying to see another LEist and she does things quite different to the others. But she knows nothing about wrapping or sleeves.
Meanwhile I'm standing here going "Fix my g**damn hand and arm" I'm happy to work on doing my own bit but I'm not an expert and the more people I see the more confused I end up.
Massage in Palmy was paid for by hosp and got one set of garments per year. No massage in Dunedin and no mention of getting sleeves. If you want anything you have to pay for it.
I'm seriously thinking about doing my own wrapping but worry about making things worse by not knowing how to get the tension right.
I've had the kinsio(sp) tape before and it did nothing for me but anything is worth a try.
I aquajog now and even if the water flow does nothing for my arm I enjoy the movement in the water and thinking I am helping my health generally.
Will be interested to see if the wrapping works on your arm.
Moira
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Moiralf, I am so sooory that youre not getting the needed help about this. BIG HUGS. The fact is NZ is hit and miss and I know Ive gone on about this before, as have others, it would be good to see more consistency. I know somewhere down in the South Island people get supplied with 2 sleeves a year. My LEist told me a custom made Jobst sleeve is a jaw dropping $300 !!! and the glove is the same. I just about fell off my chair...seriously. I wonder what they are in USA. Oh and the off the shelf ones (Juzo's I think) are a whopping $150!
Well I'm anything but out of the woods with this wrapping. I exactly hear you on getting the tension right. ... things are all over the place right now. Seems Ive been doing it too loose and it was worse this a.m after an attempt at re-wrapping last night in fact the whole outfit was slipping down when I got up this a.m. GRRRRR... ..so I used the sleeve today and there was an improvement tonight when I took it off. The fluid had definitely shifted up some instead of being stuck at a certain place below the elbow. It felt better, but Im getting quite a wide disrtibution of burning pain to the touch around the top of arm (that rounded bit) as well as the usual place in a strip under the upper arm and shoulder blade. I also have been tiring of the sleeve by night time which usually isnt the case.
I see LEist on Monday. I'm of the same mind that you definitely need help in learnig to wrap. I feel I should really be seeing her daily until I get this thing sorted, but the sad reality is there is a woeful lack of trained LEists right across the board here. My one is someone I prefer to be very appreciative of because she is so overworked and overstretched it is ridiculous. I know this is not ideal but we have to do the best we can. I really hope something turns up for you.
Another thing I should have done and havent is learn to measure myself properly. Just another thing to add to the growing pile of all that is LE. I literally spent hours getting organized with LE tonight.
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Musical and Moira, how unspeakably frustrating. Moira, it is standard protocol in the US for therapists whose patients need wrapping, to teach them to wrap so the patient can transition to self-care. Many therapists teach all LE patients to wrap, so they'll know how to do so in the event of a flare up; sometimes it is very difficult to schedule with a therapist because we really don't have enough of them, so it's critical that patients know how to wrap so they can start to control the swelling as they wait for appointments. I'm so sorry you don't have the care you need.
Musical, checkout brightlife.com and you'll see the range of off-the-shelf sleeves and gauntlets, so you can compare prices. In this world of online purchasing, it sure seems like --if off the shelf is something that works for you-- you could buy from afar. I believe that a flat-rate US Postal Service Priority Mail package to NZ is only $16 postage, and it sure seems like the nice folks at Brightlife might be willing to send for you that way.
Carol
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Musical,
So true about the variation of services.
I did actually get a custom fitted Jobst sleeve in Palmy Nth. The guy measured me in real detail and a glove too. I got it free from the DHB so that was brilliant. The down side of that is that it had no effect at improving the swelling. Mine is all over the arm, the hand can get quite swollen. Especially with the glove ON. It gets worse with the glove so how weird is that. I have had three diferent types of gloves and none of them seem to work.
As far as I have known no-one teaches wrapping in NZ. Maybe one to two but they would be the odd one. From what I have seen being in Dunedin I would doubt that anyone is well trained in LE. The hosp person responsible seems to only do ordering sleeves and short term wrapping for no more than a week. They do not encourage continued wrapping. The massage people don't know anything about wrapping and how good their training in LE is really I don't know. Most of them seem to do general massage more than LE.
It is frustrating to be caught in the middle and have no idea what to do to even to try to help myself. Still I will continue with lymp node drainage and MLD massage plus seeing the LEist to do her thing once a week. No idea about what I am going to do about a sleeve. I would like to try a lymphadiva sleeve but just not sure about what I should get.
Grrr.
moira
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Moira, yes Ive got mine free too, which is great. Im really sorry that this has happened to you and is continuing to. I recall some time ago us talking about your issue and it bothers me that you are still in the woods on this. This must be really AWFUL for you. LE is something we just cant ignore because if things turn nasty like cellulitis ...well we all can do without that!
The crazy thing about all this is measuring up for sleeves and especially gloves is it's anything BUT simple. One little mismeasurement can render a glove useless. I take it, Jobst garments have always tended to be kinda very robust, though the materials my last sleeve is made of is softer. My glove is really good except there is 2 little hard nobs of sewing between the mid and 4th finger at the base. Hard to describe but they actually dig in and leave an indent right at the base of those 2 fingers. Kinda annoying, but overall they help with the swelling on the top of the hand. Mine is minimal though.
Another thing to take into account is there are so many variables with this...like not only the heat of summer but so my LEist said, the change in seasons also, which can bring a flare. We have our activities and whether we've overdone that lifting escapade, or if we're not doing enough. We have to factor in our own particular bodies and how we know they function.
Has the hospital person said why they don't encourage continued wrapping? From what I read here, the general consensus is that sleeves only "maintain" your situation, but its wrapping that actually helps because of the gradual reduction in compression as the bandaging goes to the top of the arm and thereby helping shift the lymph away from the extremity. I've heard others say the wrapping doesnt help and sleeves do so I guess it comes down to our own indiviual situations.Have you been given a time frame for your weekly massage appt's or is that indefinite?
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Carol, unfortunately my arms dont fit the criterion of what is standard. I have small wrists compared to my upper arms and so have to have custom made. For my non domionant prophylactic side which has "suspected LE" I am supplied with an off the shelf sleeve, but the last one infuriates me being wrinkly at the wrist. It also gets caught in my watch. Grrrr. Its a Juzo, but Im told they have got more sizes now so we'll see. My replacements are a couple of months away.
Last night I got sick of my ill fated wrapping attempts and so did nothing. Still puffy around the elbow and surrounding area in general. Wearing my sleeve and mitt (glove) and its still feeling "full" in the upper arm. Hopefully I can get this sorted with LEist tomorrow.
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Musical, that is super frustrating. I'm in off the shelf with no fit problems, so knock wood, garments are easy for me to find. I do find that the Juzo Varin is wider at the upper part than the Juzo Dreamsleeve, even in the very same size. I wonder if there's an OTS sleeve out there somewhere that would work for you, but then, the trial and error to find it could be very expensive. Another forum member, Dassi, goes through crazy hoops to get gloves sent to her in Israel. Really, it should not be this hard! More blues to sing!
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? For Moira.
I'm in Dunedin Florida. Ever heard of it? We only have one LEust around here too.
Thanks
Barb -
O' Carol Carol this Ive found..
my arms are different - outta round
t'would be so nice to be like you
then I'd know just what to do! Ooooo
.....
Chorus
But now I''ll sing the blooooz
Whats a girl to do
Now I'll sing the blues
'bout these sleeves I use
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Spookiesmom,
Yes I have. A few times on mr google I have found myself wandering around Dunedin Florida until I realise Dunedin NZ doesn't have those streets. Especially when I first came down here and tried to find businesses I wanted. Needed to check web addy a little better. Google maps sent me there a few times until it worked out where I was based from. Kind of fun though to see somewhere else.
Musical I have had OTS sleeves that have fitted fine and custom made one too but they just don't seem to move any fluid. Except my hand which blows up like a puffer fish if I wear a glove. For wrapping do you use cotton padding under the bandages or just straight bandages on skin? LEist used cotton tube over arm then padding wrapped around hand and arm and then bandages over the top. Did she give you the wrapping or did you have to buy it. Pretty sure I would have to buy everything myself. Ok if it worked but not sure what to do.
Moira
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Hi Moira, the garments should absolutely NOT be making your hand do that.
I would put that mitt on the back burner for sure. I wouldn't ditch it though, because it MIGHT come in handy somewhere down the track. Ive heard of ladies "stretching them" or otherwise dealing to them. The point is ill fitting garments can make you worse off. Hence the necessity of proper fitting. Just as an aside, like Binney says, we can use old garments for temporary stuff if we know we're gioing to get dirty or something.It'shard for me to come to an exact and accurate description of how things (should) work because I've found my LE has been somewhat sneeky especially in the swelling dept. Its not as if Ive had anything blow up suddenly, or in a marked way, until this recent sceneario.
Ive had what I call "episodes" of issues like aching, sensitivity and burning pain on an intermittent but ongoing basis right from the start. These have been helped by 4 simple exercises I was given at the outset. Ive also had minor swelling (odema) issues b4 BC and LE and so that muddies the waters as to what is responsible for what.
OK, now for the bandages etc, I'm still finding out exactly what, if anything, will be supplied. I think this all will be out of pocket. Ill report back after appt tomorrow for sure plus I'll also get prices if I can. I was given a couple of rolls of the small bandages, tape, etc, but these current bigger main bandages Im sure were only lent to me.
These were put on me in the following order... (excuse my lack of correct names...Ive just described them)
- Finger gauze bandaging about an inch wide (which sorta sticks to itself)...is supposed to last for about 3 washes. ( I cant for the life of me envisage how anyone would be successful at this!)
- tubular cloth (like mutton cloth) with thumb hole cut out...goes next to skin ... overlayed with...
- a soft cotton wool type bandage (about 1/4" thick)
- 3 bandages (not crepe) which are different widths, starting with the narrowest at the hand to the elbow and
- Sticky white paperish tape to secure bandages.
Yes if we're going to be forking out for this stuff, we want to know its going to work.
Musical
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Moira, let's clarify that the bandages used for LE wrapping are special for that purpose, called short-stretch bandages. They are special in that they apply high pressure when you're active and muscles are moving, but when you're at rest, the pressure subsides. An Ace bandage is often confused for LE bandages, because it looks about the same, but the Ace elastic bandage gives high pressure constantly. Lymph moves when muscles surrounding the lymphatic vessels push against them, and the bandage gives a firm surface against which the muscles can push, and that's what helps move our lymph along. So it makes sense that if your arm is still--say, your in a cozy chair reading--you want the bandage to relax, i.e. not constrict the lymph vessel when the nearby muscle pump is not at work.
There's a company here that's somewhat new to manufacturing LE bandage supplies, although they have been making many types of bandages, including elastic versions, for many years. It's called AmbraLeroy. Their products are apparently much less expensive than other suppliers, and you can see the products and prices here: http://www.ambraleroyonline.com/catalog/c28_p1.html
I know that they are working to expand product distribution for the LE line. They also sell direct through the online store. If the price is much less than what you have to pay in NZ, I wonder if they would be willing to ship to you, which is not horridly expensive if using a USPS flat-rate ship box. I have a contact there and if either Musical or Moira (or anyone else) is interested in investigating, PM me and I'll give you his name and email address.
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Oh, and Musical, you do have a talent for tunes!
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Thanks, Binney. It's amazing to think bandages could be re-used for so long.
Thanks for the tip on the taping As for the kinesio, I am still not a BIT comfortable with the idea of it being around my finger in *any* way, under any circumstance. I dont quit understand why she can't gently 'pull' the skin ( as in MLD) and then put the tape there. I dunno'. I will ask the next time I see her.
One thing I have (finally ) learned is , I will not let ANYONE do ANYTHING to me that I just dont feel comforatble with.
Doesnt make sense.
MusicalIf I do get a taping that I am okay with, I will post a pic. MUSICAL...are you wearing a watch on your LE arm ? (IF SO, pls re-consider.)
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Thanks Carol for the link and excellent recap on the bandage types...and how they work! Yes short stretch bandage was what I was trying to think of.
Now .....
Words and words and more words still
to fill a book - enough until
a sound is found - not what we spoke
But verse to verse and note to note... La lalaaalaalaaaaNeed some music - melodies,
to sing these words to
would you like to sing up please
these lyrics are for you!
Sing it now! La lalaaalaalaaaa
...................Purple yes please, I d appreciate that re the piks. As for my watch... its on my "suspected LE" arm (non dominant). That hand has never swelled as in LE type..., and my watch doesnt bother me, but only the pathetically ill fitting sleeve.....The fact is my arm got SUCH A HARD TIME with chemo, blood tests galore, BP and everything else you could imagine, it finally said ENOUGH !!!!!
. In the face of much pressure to the contrary, which I withstood BTW, now everything goes in my foot or leg (for BP).Moira How are doing ? Well I asked LEist about prices and she has to "dig into the system" to find out as things (products) are changing. The stretch bandages she's lent me to see if they will be suitable. If so she will order me some. As I said they are about 14 to 16$ depending on size. Those crazy lil finger wraps are $3 a roll and at that price you'de be wanting to get a couple of washes in if poss. Reckon Ive worked out a way IF youre careful enough in removing them. If ya scrunch em up...welll NAH... dramas galore and you might as well spit into the wind..
She will supply me and I will get things cheaper by the sounds of it. She's not pleased with the cotton wool padding type bandage which she wont be able to get soon. The new ones apparently are cheaper but you cant wash them, so they'de more than likely work out dearer. Anyway shes put a new padding type on me this a.m..
This time I videod what she did plus I got her doing a test that measures the fluid somehow. She said the testt was more for unilateral patients and because I have issues both sides the results could be somewhat subjective. She had to pay for the machine herself which WASNT CHEAP, but theres a new one that does bilateral patients. It's twice the price and she said she wont be getting that anytime soon. DHB wont pay out for this stuff.
The strange thing is in comparing measurements over time, my arm appears to be quite "stable" with only very minor variations ...so what about the puffiness thats going on??? go figure!
I mentioned Dunedin and the services available and garments supplied for LE patients, and LEist "thought" it was good down there. Moira have you asked the people you've been dealing with, what the story is on sleeves being supplied? Please don't let them fob you off. I know this is hard but youre obviously suffering.
Well its onto round 2 and LEist has done another nice wrapping job on me.
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Thanks Carol, I appreciate the clarification on types of bangages and will be careful to get the right ones.
Musical, that's what I had for my arm so yes it is the right thing to do. Need the three different parts of the wrapping.
I think I will try, again, with the physio at the hospital and see if I am due a new sleeve and if she can point me in the right direction for buying the wrappings and doing it myself.
If that doesn't work out I will see about getting the stuff from that website Carol.
Obviously my hand and arm don't respond like they should to standard treatments, otherwise the things I have been trying would work. That's no reason to stop trying and give up as far as I am concerned. I really don't like being told NO or can't help you. I beg your pardon I think you will help me or I will nag you until you are sick of me. Plus I then go out and look for my own solution.
But it is annoying to feel like no matter what, nothing is improving. Never say never is my lymphodema motto. Or it is now.
Thanks guys I truly appreciate the help. Musical, love the song lyrics.
Moira
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Forgot to say my bandages - are diff-er-ent this time
Instead of going round the same - they weave in front, behind
Its said to help it hold in place - instead of slipping down
So I'll report it back to you - and tell you what Ive found..
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Musical, you should do a youtube, singing a wrapping tune as you weave the bandages to keep them from slipping down. You could show just your arm if you want to stay anonymous. It could be both instructional and inspiring!
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Update part 1
Im waiting for these words to run their course - so that is that....
The trouble is they aint done yet - and keep on coming back
These crazy rhymes- they fill my lines - its time they went away
But just the same, I wont complain, if someone smiles today!Update Part 2... to Carol ..LOL even the best lip sinking would be sub standard for this job!
A video! O help me please My PT does with ease:
Figure eights all neat and straight and all in such a breeze
Imagine me a video - all fingers thumbs and frowns
Cant sing, my chin digs in my arm - to hold the bandage down!I can't zoom in I cant zoom out to edit something out
Like if I biff the bandage round the room - and thereabouts
An arm from two makes only one to show you how it’s done
My awkward side just cannot hide - this battles far from wonUpdate Part 3
I wrestled with my video, to upload it onto..
A ‘pooter full and underpowered - the USB is 2/too
And all the while - My LE file - was at about 3 GIG
My camera gagged, and Windoze sagged because the file was BIGBut anyway, I made some space – It’s now ready to view
I’ve made a start to the “LE art” - Im quarter the way thru
Now I know my time is up to try again to wrap
That is where Im up to girls and that is where I’m at! -
Now thats a whole lota fun!
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Musical, you are keeping me in stitches!
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Its so nice to see humor on the threads as it makes us belly laugh which moves our lymph system!
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