ALL THINGS Gloves and sleeves
Comments
-
YW...sure hope you dont have that many expenses next year!
0 -
Hi all, I am about to leave on a 2 week long work trip, and I need advice on how to wash my day garments.
Where I am going, the water is grossly polluted (comes out of the tap brown and often smells like sewage according to people who live there). People drink boiled and bottled water, but what should I do about my custom day garments? Washing them in bottled water is prohibitively expensive, and boiled water would take too long to cool. Bleach also seems like a bad idea. Not washing them at all seems like begging for cellulitis.
To make matters worse, because of screwups at my DME company and the garment manufacturer, the second set of custom garments I ordered in early March have still not arrived. So, I only have one sleeve and one glove.
Suggestions from world travels and hikers? KS1
0 -
KS, yikes!
What an "interesting" dilemma
! Can you boil the water in the morning and wash them in the evening, or are you going to be traveling the whole time? (Bleach is indeed a very bad idea, BTW
) Can you wash them in boiled water you've already used for rinsing the dishes, or for brushing your teeth? How about throwaway cheap cotton gloves to wear over them?
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#GLOVES_AND_HYGIENE
Please do keep us posted on what you discover.
Binney0 -
KS1
WHY can't you convince the DME co. that you need that second set RIGHT NOW? ( I soooo want to call them for you!!! :>)
I'm with Binney on boiling water each a.m. and using it ea. evening. Dont forget to pack some keflex etc ..
Good Luck.
0 -
KS1, look for a backpacker's filter bottle or filter pump, and if a bottle, find one that you can squeeze the water out of, as opposed to having to suck it out through a straw. Here's a pump: http://www.outdoorgearlab.com/Backpacking-Water-Filter-Reviews/Katadyn-Hiker-Pro These things are very small and lightweight so very packable. It sounds like your water will be pretty dirty, so you might need to bring some coffee filters --read the article I linked to, which explains using those. And, to double hedge your bets, you could also drop some purifying tabs into the water (http://www.outdoorgearlab.com/Backpacking-Water-Filter-Reviews/Aquamira-Water-Treatment-Drops).
We camp from our kayaks for a week each summer, drinking river water through filter bottles as we paddle. For camp time at night, we use a pump system to fill up our cooking and wash pots. I've taken my filter bottle to Moldova, where I'm told nearly all the groundwater (hence wells) is contaminated with 'stuff' and giardia, and in a two week visit nothing nefarious happened!
You should be able to use the miracle of Amazon to get filtration bottles/pump in a day or so, if this idea appeals to you and you can find a few more inches of space in your bags. Or at any camping outfitter store.
Sounds like you're off to a very interesting place, where people maybe do not have much of what we take for granted, and despite the trouble with your LE garments, experiences like that do tend to help us count our blessings and put even BC and LE in better perspective. Best wishes for a safe trip that rewards you in whatever ways you're hoping for.
Carol
0 -
All I can say is Wow, Carol!
You ladies are just truly amazing ... I STILL want that second sleeve here in time though :>)0 -
KS1's second sleeve needs to appear asap, that's for sure. She did her part, planning in advance. I hope her DME can be made to move mountains and get that sleeve to her, pronto. What a bunch of unneeded frustration!
0 -
I remember buying my neice one of those filtration bottles before she left for Haiti/Peace Corps
if my memory holds, found it at EMS or just a local sporting store, she said it worked well and Haitian water is really brown..
0 -
You guys are FANTASTIC! I had planned to rely on purification tablets, but then learned they were just chlorine or iodine pills. Binney, do you know if iodine is bad on garments like chlorine.
I ran the "fill the sink with boiling water and let it sit" plan by someone who has been to the area, and she said it was a bad idea because of back flow from the drain pipes. (People keep standing water in their sink to keep the smell down.)
Now the filter system sounds brilliant. I gather it doesn't filter out everything (viruses), but if I can get the water "clear" than I found the SteriPen UV system that is supposed to kill viruses etc. from clear water. Carol, do you know anything about it?
http://www.steripen.com/products/
Here's my current plan based on your suggestions: bring 2 covered tupperwear containers, each morning fill one them with a combo of boiled & filtered/UVed water, and use one for washing and the other for rinsing the garments. Sound good?WRT the second set of garments, I have pleaded with my DME to no avail. They say they feel just awful, but there is nothing they can do. Here's what happened ... I got the garments in early April., but they were grossly wrong (to quote my husband, compared to my first set, "they look like they are meant for a different species"). Juzo admitted they mismade the original set of garments, and so I returned them. I told a Juzo rep exactly what was wrong with them over the phone, and sent email to the DME company with photos and a detailed description. My DME rep claimed she forwarded the email, but she has since left the DME company (without telling me), so who knows....I remember foundly when I could pack all the stuff I needed for a weekend in a large ziplock baggie. Now a baggie barely covers my meds ... KS10 -
KS, what garments do you have (I know they're Juzo, but what the name of them)? Let me know and I'll see what I can find out about iodine and their fabric.
Binney0 -
KS1, the Aquamira tabs do eliminate viruses, and I just looked at the company's website. Here's what it says:
Chlorine dioxide, a well established disinfectant is the active ingredient in Aquamira® Water Treatment Drops. Chlorine dioxide is iodine and chlorine free. The unique formula works by releasing nascent oxygen, a highly active form of oxygen, which is a strong oxidant and a powerful germicidal agent. Chlorine dioxide has been used by municipal water treatment plants to kill a variety of waterborne pathogens since the late 1940s. Unlike free chlorine (familiar as household bleach) or other halogen chemicals (such as iodine), chlorine dioxide does not create potentially harmful by-products.
I was wondering if the product would somehow bleach or harm your garment. Take a look at their 'contact' web page--they're practically begging you to call them to explain your problem and ask if these simple little drops are part of the solution! http://aquamira.com/contact-information
The Steripen may pose problems in that you need power to run it, and I think there's an issue with having the right-shaped container to stick it in. I've never used it myself so cannot say from experience how well it works. We run our well water at the house through a multi-stage filter that ends with exposure to a UV light, so I know that UV is highly effective for water purification. I just don't know if the little pen is really easy to use and foolproof.
I'd love to know what else you learn and of course, how your ultimate solution works for you on your trip!
Carol
0 -
I wear a Juzo expert glove and a Juzo soft sleeve. Given that I only have the one set, I will also bring my old Juzo silver expert fingertip-to-axilla glove. It's pretty long in the tooth (> 1 year old), but it is better than nothing ...
The steripen is battery operated, and yes, it supposedly eats through batteries. KS1
0 -
I know I'm veering off a bit , but I dont want to intrude on the compression T thread since Carol is working on helping with a new design....
Has anyone ever tried this T ?
http://www.tommiecopper.com/product/womens-short-sleeve-shirtReally looks good. I wonder.
thx
0 -
Here is a prior thread that I asked that question:
http://community.breastcancer.org/forum/64/topic/797507?page=1#post_33349420 -
Thanks, gma!
It does look as though it might be okay for some mild truncal. I wasnt suggesting it for long sleeves in place of one of ' our sleeves' etc ...0 -
I just bought a new set of sleeves and gauntlets - I decided I wasn't going beige for this set... I went AZURE !!! LOL - We shall see, we shall see. Juzo dreamsleeves - I seem to like those. Have pink and beige ones. By the measurements my right hand is now a small gauntlet - hopefully, the measurements are correct..
0 -
Great, gma ... you go, girl !
Are you out of a glove then ?!0 -
Yes at this point - It hasn't gone down to the hand - just the upper arm - Measurement before PT is 1 cm smaller than when I started back up with my LEist this week when he measured. 1cm larger from elbow up.
0 -
Love Love my Lymphediva sleeves. I have had a few. Just throw in the washer and dryer but they say don't use fabric softner. I wear the glove for about half the day then take it off. I have read where without the glove it could trap the swelling in your hand. I wear the half glove though can't stand it being to the top of my fingers.
0 -
So what is it we use to make the silicone sticky again??
0 -
oh dear, how to make it sticky again? I know how to get it...unsticky! will ponder it but how about emailing our good friend Josh?
betcha he has an idea
0 -
Isn't it rubbing alcohol what we use? I know I have something in my supplies and was just thinking yesterday that I need to use a toothbrush on the silicon band as one of my sleeves is slipping. If no one knows then when I get home I will have a look and post. I would be careful not to get it on the garment though.
0 -
Well, I've got LE. I'm told it's mild but it's frustrating! I just received my custom Circaid/Juxtafit glove. Does anyone have any experience with this brand? I don't think it's working
0 -
Mardibra, so sorry for the stupid LE frustration!
I do have the Circaid/Juxtafit sleeves and gloves (my LE is bilateral). Are you using them only at night, or for daytime use? Have you been taught self-Manual Lymph Drainage to do daily at home? You mention only the glove--do you have the sleeve too?
I actually found the Circaid glove to be ineffective as well, and never use it. I use a Gottfried glove with the Circaid sleeves, but vastly prefer just Cottfried gloves and sleeves for daytime and Solaris or JoviPac garments for night. Also, unless you've been taught to wrap your own arm with short-stretch bandages and have gotten a feel for how to adjust the gradient compression, Juxtafit garments can be tricky to use.
If you would like to tell us a bit more about your LE treatment so far, we could offer more information.
Be well!
Binney0 -
dang, I forgot to check on the cleaning of the silicon band. Ill go to stepup-speakout and see if they have it listed.
mardibra. Yes some wear juxtafit/circaid. I don't think many people like that brand. Hope they come on board soon to advise. I would like to validate your feelings on frustration of LE. Only us girls that have LE can really know that it is a rotten thing. Please do post weather venting which is welcome or if you need LE info.
0 -
Dang I can't find out what product I use to clean the silicon band. Ill try to get back on it.
0 -
I have Juzo with a silicon band and had no problem........doesn't routine washing make it hold? I've never found the band to feel 'sticky' whether it be new or old, clean or in need of cleaning.
0 -
Marple, my shedding (oh gross)dry skin adheres to the silcon and after a while I don't think the washing machine can get it off. The stuff I use is great. Keeps that band clean. As good as "it stays" but I don't need that if I keep the band in original condition, clean.
0 -
I bought a sleeze after surgery as a preventative measure considering I fly a lot for work. Wore the sleeve when I flew but never had any issues. Then bam! My left hand starts looking really swollen. I immediately knew what it was. I went to an LE physical therapist and she showed me how to do MLD and it seemed to work and it was gone for a few months. Now its back and its not going away. I went back to the LE PT and she showed me how to "wrap" but left me with the impression that I would have to wrap 24x7! Of course, I couldnt handle that..couldnt drive, couldnt type, not a good thing. She suggested I get the glove that I have so i was sent to another LE PT who was a distributor of the Circaid/Juxtafit glove. She measured me, ordered the glove, but it seems too loose I think. She was supposed to order me some sort of kit containing various sizes of the "wrap stuff" but I never heard back from her. I need to do some research on what to do and how often because im concerned that it only gets worse from here.
Suggestions?
0 -
Hi Marple - I have juzo sleeves and usually they stick fine but I've had my inner child playing with matches lately (hot flashes) and I just can't seem to make them stick by the end of the day - I can't use that adhesive because I'm allergic to adhesives - and somewhere on this board, we had a discussion about the silicone band and how to clean it when the washing doesn't do it. I'm waiting for my new ones to come in and these are getting old, so just trying to make them last a bit longer.
I don't know how many of you stay compliant and wear your garments all the time, but kudos to you!!! - I need a break and I've just had to be more compliant this last month with the swell from pt.
0
