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

KS1 · May 2011

A couple of weeks ago, I described a device I had created out of Komprex. I have improved the design somewhat, and am trying to upload some pictures. I see the tree icon, but it seems to require that the pics have a URL. Is there a way of inserting pictures that aren't on the web? KS1

omaz · May 2011

Get a free account on photobucket, upload the photos, then do the link for photo here.

ktym · May 2011

Binney,

I was sure I'd seen a posting by you some pages back about help with what to say when appealing for further reimbursement for LE with your insurance company. I've been scrolling back and forth through these pages and can't find it. Was I hallucinating? Any advice?

KS1 · May 2011

I devised something out of Komprex that has been doing a very nice job under my day garments and night time Tribute at reducing MCP swelling. My LE Tx thought it was nifty too and put it on when she bandaged me.

Here's what you do: Take a piece of Komprex with enough channels to cover the dorsum of the hand (for me, 7 channels) and about 20 cm long. Cut slits between the channels to act as holes for the fingers to go through. Cut off edges of the outside 2 channels. The soft fabric side goes against the skin. and the fingers go through the holes and act as an anchor when putting on a day or night garment.

Here's a picture of the thing off:

http://s1195.photobucket.com/albums/aa391/ks1111/?action=view&current=Komprex_device.jpg

Here's a dorsal view

http://s1195.photobucket.com/albums/aa391/ks1111/?action=view&current=dorsal.jpg

Here's a palmar view

http://s1195.photobucket.com/albums/aa391/ks1111/?action=view&current=palmar.jpg

I don't usually tape the thing down, but here is a pic with it taped so you can see how it fits

http://s1195.photobucket.com/albums/aa391/ks1111/?action=view&current=dorsal_taped.jpg

Here's what it looks like under a glove:

http://s1195.photobucket.com/albums/aa391/ks1111/?action=view&current=Doral_glove.jpg

Here's what my hand looks like after wearing it under a day glove for about 3 hours

http://s1195.photobucket.com/albums/aa391/ks1111/?action=view&current=Hand_postKomprex.jpg

Christine5 · May 2011

KS1- I can't get the photos to open. Would love to see them.

KS1 · May 2011

I couldn't figure out how to insert the pictures directly. Have you tried copying the links and then pasting them into a browser window? KS1

binney4 · May 2011

kmmd, I looked it up, and it's on page 42 of this thread. I'm just sorry anybody needs it -- getting decent care shouldn't be this hard! Yell

Binney

binney4 · May 2011

KS, pasting them worked for me, and it's a really interesting arrangement. How have you solved the problem of irritation between the fingers? Please keep us posted on this, too. I think you may be onto something here! Smile
Binney

ktym · May 2011

I know Binney, so very frustrating. THANK YOU

kira · May 2011

KS1, it does work in browser window. I couldn't figure out how to copy the URL to put it in a photo here.

omaz · May 2011

I posted how to do picture, kittydog has better way so I deleted mine here.

Diagnosis: 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+

KittyDog · May 2011

In photobucket, click on the HTML link. Photobucket has it so it automatically copies the link now. Come back here and click on post. Then on keyboard, click Ctrl and v at the same time. A new window should pop up. Paste your link in that space and then click on insert. There you should have a picture.

This was me getting ready to get my hair shaved after my second chemo. My girl was kissing my hair goodbye.

omaz · May 2011

I knew someone would have an easier way, thanks kittydog!

cookiegal · May 2011

OMG so I thought I had lost my glove at work, I dug through 5 garbage cans, and had to ask anyone if they had seen it. (I work with a lot of college age boys!)

I realized most people have no idea why I wear a glove. They just think I have crappy taste in gloves!

I did find my glove. (It was in my jacket)

BTW I have found that as it gets warmer the easiest thing to wear with long sleeves, is a zip front hoodie of very breathable athletic fabric. It is not as hot as other long sleeve tops.

3jaysmom · May 2011

hey guys, with photobucket, its' even easier.. there's a cheat... just hit copy, go back here, and paste. i had to add a plug in (mozilla) and all i have to do is alloww... let me know if it works for ya!

by the way, i got the bi lateral sleeves in black, size med. 15-21 (im like Binney less is better) and i LOVE IT!!! its; still too long on the cuff, tho, so im gonna cut it, and just stick it lower. since there's no "wave" there, i think it'll be ok. my gloves add compression where the cuffs are, so it fits grrreat.. thanks for leading me to it, ladies... 3jays

kira · May 2011

Cookie, did you find your glove.

So, for the photos, do you use that photo link--next to the emoticons? When I do it, it copies my pictures twice all the time.

Kira

omaz · May 2011

I punched myself in the face yesterday putting on my sleeve. Hmmm. Daughter thought it was funny.

KS1 · May 2011

I tried re-posting using KittyDog's instructions, but my computer got hung. I'm trying once again.

I devised something with Komprex to reduce the swelling the in my hand that I have been wearing under my day and night garments for the last week or so. It seems to work quite well in reducing dorsal swelling, particularly between the MCP joints. My LE therapist thought it was nifty and put it on when she bandaged me.

Here's how you make it. Take a piece of Komprex 20 centimeters long and as many channels wide as your hand is (for me, 7 channels). Because the back of my hand is wider than the finger portion or my wrist, I cut off the outer channels that correspond to my wrist and fingers. Cut slits between the Komprex tubes for your fingers to go through. Place the Komprex piece on the dorsum of your hand with the soft fabric portion touching your skin and the mesh side facing outward. Put each of your fingers through one of the finger slits.

Here is what it looks like when the Komprex piece is off. (The ruler is in centimeters.):

Here is a dorsal view:

Here is a palmar view. Notice how each finger goes through one of the slits and the Komprex piece wraps around and covers the top of the palm. If you normally wear a palmar swell spot with your garments, you may find that you don't need to as the Komprex on the palm serves a similar function.

I don't tape the Komprex piece on because the finger holes act to anchor the Komprex piece and keep it oriented correctly, but here is a picture of it taped so you can see how it looks on the hand when it is under a glove.

The Komprex adds bulk, but I am able to wear it under an old, somewhat stretched out glove. This glove goes pretty high up the wrist and in this picture you can see the bump where it ends before the end of the glove:

Here's what my hand looks like after wearing the Komprex under a day glove for about 3 hours. The vertical lines are from the channels and tubes of the Komprex. My hand isn't perfect (there is still some ulnar and finger swelling), but you can see the tendon of my middle finger and the pockets of fluid between the MCPs on the ulnar side are reduced.

Binney, you asked whether I have solved the problem of the Komprex mesh irritating the sides of my fingers. The answer is partly. By making finger slits, the tubes stay oriented correctly thus reducing the amount of mesh-skin contact. Also, I carefully have cut off as much of the mesh as I can on the edges of the finger holes. (You have to be very precise because the mesh holds the Komprex tubes in place and if you cut too much off, they pop out.). One thing I haven't solved is that sometimes when I put on my Tribute doing so pushes the Komprex piece on too tightly against the webbing between my fingers. But, sometimes, when I put just my Tribute on, the fingers hit the finger spacers and that really irritates the finger webbing. Can't figure out why this happens.

ktym · May 2011

Omaz, I've done that too. Usually on the days I'm most tired and in a hurry. DH does a pretty good job of trying not to laugh

KS1 · May 2011

OK - well I have failed! You can see the pictures by cutting the links and pasting them into a browser. KS1

KittyDog · May 2011

KittyDog · May 2011

Kira I don't use the picture thing by the smile. I find it easier to just copy and paste the HTML link.

binney4 · May 2011

Kittydog, thank you! Kiss I love people who solve problems so directly. End of muddle! Love it.

KS, how about a strip of Artiflex wrapped around each finger hole? That way you can leave the mesh in place to hold the thing together, but there won't be any risk to your skin from the rough edges.

Those Solaris finger spacers can be a problem. Tongue out It seems to me I remember they said you can snip them up a bit if they're irritating the webs between your fingers, but I've never tried it (the price of a Solaris garment sort of discourages tinkering with it! Surprised ) But you could call or email them and ask for more information about solving that problem.

Be well,
Binney

DesignerMom · May 2011

Hi Everyone and a special thanks to Binney and Kira for all your excellent advice and links!

I was just fitted for my first sleeve and gauntlet as I am flying soon. Like many of you, my BS says I have no LE. The PT, who is trained in LE, said my arms measure the same. My gut feeling is that there is a problem brewing because: 1-my BC arm just "looks" less muscular, a little puffier. 2-it feels like it is bruised when I press on it, especially around the elbow. 3- I feel a pulling, very tight feeling. When I asked the PT about the pain, she said that typically LE doesn't have pain. Is that true? My glove fitter said that if the tissue had extra fluid, it can cause pain and sometime she has had people have immediate relief by just putting on the sleeve. As I am a new to all this, do you all have the rubber gloves to pull on your sleeve? They are the dickens to get on! Like one of the other ladies, I nearly punched myself out trying!

omaz · May 2011

DM - Welcome! Just a note, when I got my first sleeve it was too short and I accumulated fluid in my wrist area. I now have a 'long'. Make sure there isn't a space between the lower arm and the wrist that is uncovered. Probably the gauntlet will do that, I didn't have a gauntlet at first. Also, at the top the arm shouldn't bulge too much over the rim. Mine did and in addition to needing a 'long' I also needed a 'max' size. good luck, I was just thinking this morning what a huge difference it makes to go through this with other women who understand and can help - I can't imagine doing it all alone!

binney4 · May 2011

Omaz, thanks for the reminders about good fit. Here's a page with pictures of proper and not-so-good fit in garments:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Designermom, "typically" there isn't exactly pain in the arm, but sometimes there is. LE is complicated, and nobody's ever entirely "typical". Undecided

Here are some options for getting those stupid sleeves on with a modicum of grace and a lot less injury to your face!:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm#Helping_you_don_

I have the Jobst donning gloves and they're reasonable and better than rubber kitchen gloves for donning. And I also have the Ezy-As, which I at first thought was just a bunch of bother, but after using it for a week or so I found it sooooo much easier than tugging the things on. No more fat mouth from punching myself Embarassed , the fabric lies down just where I want it, and it's so simple. Now I even take it to fittings because it's so much easier than tugging new sleeves on. I've never tried an Easy-slide or Slippee, but a lot of women depend on them. Hope some of that helps!

Hugs,
Binney

ktym · May 2011

I think I'm going to have to get DH one of those devices for getting the garment on easier. Not listening to me complain every morning about how much "I hate getting this thing on!" will be as much his present as mine. Wink

cookiegal · May 2011

In a pinch a plastic bag with a hole in the corner will work. I used one that used to hold 8 rolls of toilet paper.

kira · May 2011

You know what? Unitil I saw all the piictures laid out by Kitty, I didn't realize it's all one piece! I thought it was a palm and a dorsum piece!

Great idea. And a picture is worth a thousand words.

Thank you Kitty.

Kira

DesignerMom · May 2011

Omaz and Binney- thanks for the tips, I'll check them out. My fitter seemed very knowledgeable and did give me the long sleeve. It reaches right up to my armpit and covers my wrist "knuckles", then the gauntlet layers over it. Because of binney's good advice, I checked the proper fit tips on stepup-speakout before getting fitted. What would we do without each other to watch our backs!!

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

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